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1.
J Pediatr Surg ; 57(7): 1423-1431, 2022 Jul.
Article in English | MEDLINE | ID: mdl-33223226

ABSTRACT

INTRODUCTION: We aimed to investigate QoL in EA patients in relation to comparison groups and to clinical factors including experienced traumatic stress. MATERIAL AND METHODS: Adolescents with EA in Norway born between 1996 and 2002 were included. Clinical assessment and patient's characteristics were collected. Quality of life (PedsQL), traumatic stress (IES-13) and mental health (SDQ-20) were compared to groups of healthy controls, children with acute lymphoblastic leukemia (ALL) and kidney transplanted children (TX). RESULTS: 68 EA adolescents participated. Total scores for PedsQL were not different from the healthy group and ALL patients, but significantly better than the TX patients. The subscale for physical performance was significantly lower than in healthy adolescents, and nine (17%) patients had scores ≤70 indicating reduced health status. Five EA adolescents (12%) had mental health scores suggesting a psychiatric disorder, and six (9%) reported high traumatic stress scores with a significant correlation to days on ventilator in the neonatal period. The strongest predictors for quality of life among EA adolescents were self-reported mental health, posttraumatic stress and GERD symptoms. CONCLUSION: Scores for Quality of life in the EA group are good except for subscale for physical performance. Symptoms of posttraumatic stress, mental strain and gastroesophageal reflux are predictors of reduced QoL.


Subject(s)
Esophageal Atresia , Gastroesophageal Reflux , Adolescent , Child , Esophageal Atresia/psychology , Esophageal Atresia/surgery , Humans , Infant, Newborn , Mental Health , Quality of Life/psychology , Surveys and Questionnaires
2.
Child Care Health Dev ; 42(5): 735-41, 2016 09.
Article in English | MEDLINE | ID: mdl-27283955

ABSTRACT

BACKGROUND: Musculoskeletal pain in cerebral palsy (CP) is common, but probably undertreated. The aim of the study was to explore if recurrent musculoskeletal pain (RMP) related to the CP condition was associated with visits to the family doctor [general practitioner (GP)] and specialist habilitation centre in youth with CP. METHODS: Seventy-four youth with CP (mean age 16.5 years, 40 boys) from the same geographical area were assessed by clinical examination, semi-structured interview on pain (adolescent and parent together), the two questions on pain from the Child Health Questionnaire (parents only) and a structured interview on health care services. Gross Motor Function Classification System was level I 39%, level II 23%, level III 8% and levels IV and V 30%. RESULTS: Thirty-five participants (47%) had visited their GP last year, and 49 (66%) had visited the specialist habilitation centre. The presence of RMP (n = 58; 78%) was not significantly associated with having visited the GP or the specialist habilitation centre. Still, in participants with RMP, increasing pain severity was associated with having visited the GP. Rest, massage, change of position and oral drugs were the most common measures taken to relieve RMP. Three adolescents with RMP did not take any measures to relieve pain. CONCLUSION: Youth with RMP do take measures to relieve pain, but usually not in the direction of consulting the health care services available unless the pain is severe. Both youth with CP and their caregivers should be encouraged to discuss RMP with their professional network of care.


Subject(s)
Cerebral Palsy/complications , Family Practice/statistics & numerical data , Musculoskeletal Pain/etiology , Patient Acceptance of Health Care/statistics & numerical data , Adolescent , Cerebral Palsy/therapy , Female , Humans , Male , Musculoskeletal Pain/therapy , Norway , Pain Measurement/methods , Recurrence , Rehabilitation Centers/statistics & numerical data
3.
Clin Genet ; 79(1): 35-43, 2011 Jan.
Article in English | MEDLINE | ID: mdl-21143468

ABSTRACT

Familial adenomatous polyposis (FAP) in a parent requires diagnostic follow-up and treatment from adolescence in possible gene carriers in order to prevent cancer development. A nationwide sample (n = 22) of adolescent FAP offspring including 85% of eligible individuals aged 11-20 years and their parents were interviewed with regard to adolescent mental health, psychosocial functioning, knowledge about FAP and genetic risk, and experiences with testing and surgery. Thirty-six percent of the FAP offspring fulfilled criteria for a psychiatric diagnosis. For adolescents older than 15 years, this was increased relative to a comparison group with Hirschprung's disease and a general population sample. Neither genetic testing nor FAP diagnosis in adolescent FAP-offspring differentiated significantly between those who fulfilled the criteria and those who did not for psychiatric diagnosis, while a global score of chronic family difficulties did. This may imply that experiencing parental illness more than inheriting FAP is a perceived stressor for adolescent FAP offspring.


Subject(s)
Adenomatous Polyposis Coli/genetics , Adenomatous Polyposis Coli/psychology , Family/psychology , Genetic Testing/psychology , Adenomatous Polyposis Coli/diagnosis , Adenomatous Polyposis Coli/epidemiology , Adolescent , Child , Female , Genes, APC , Humans , Interviews as Topic , Male , Mental Health , Reproduction , Risk Factors , Social Behavior , Young Adult
4.
Eur J Cancer Care (Engl) ; 18(4): 364-70, 2009 Jul.
Article in English | MEDLINE | ID: mdl-19473372

ABSTRACT

Children in remission from acute lymphoblastic leukaemia: mental health, psychosocial adjustment and parental functioningThe objective of this study is to assess the mental health and psychosocial adjustment of children in remission from acute lymphoblastic leukaemia (ALL), and parental functioning compared to healthy controls. A cross-sectional study of 40 children treated for ALL (mean age 11.8 years, range 8.5-15.4) and healthy controls (n = 42) (mean age 11.8 years, range 8.11-15.0) were assessed by the Child Behaviour Checklist (CBCL), the Youth Self-Report (YSR) and the Strength and Difficulties Questionnaire (SDQ). The parent's own mental health was assessed by the General Health Questionnaire (GHQ-30). Children treated for ALL showed on average significantly more symptoms as measured by the CBCL Total Behaviour Score for mother's report (P = 0.005), and for father's report (P = 0.004) compared with healthy children. Fathers reported more anxiety (P = 0.03) and depression (P = 0.02) as measured by the GHQ-30 compared with healthy controls. Children in remission from ALL showed on average significantly more problems regarding mental health and psychosocial adjustment, as reported by their parents, compared with healthy controls. Adequate rehabilitation and follow-up programmes should be implemented for children in remission from ALL. The results indicate the need to pay attention to the mental health of fathers during the rehabilitation phase.


Subject(s)
Adaptation, Psychological , Mental Disorders/epidemiology , Parents/psychology , Precursor Cell Lymphoblastic Leukemia-Lymphoma/psychology , Adolescent , Adult , Anxiety/epidemiology , Child , Cross-Sectional Studies , Depression/epidemiology , Female , Health Status , Humans , Male , Middle Aged , Norway , Precursor Cell Lymphoblastic Leukemia-Lymphoma/rehabilitation , Remission Induction , Surveys and Questionnaires
5.
Acta Paediatr ; 98(4): 670-4, 2009 Apr.
Article in English | MEDLINE | ID: mdl-19006523

ABSTRACT

AIM: To assess a possible therapeutic effect in children and adolescents with cerebral palsy of a habilitation programme in a warm sunny climate. METHODS: Fifty-seven children and adolescents with cerebral palsy, all integrated with normal functioning children through mainstream schooling, received an individualized four-week habilitation programme at a habilitation centre in Lanzarote in the Canary Islands. They were clinically assessed before and after treatment, and again after three and six months. The clinical tests included gross motor function measure (GMFM) and the paediatric evaluation of disability inventory (PEDI). Mental health and self-esteem were assessed by using the youth self report (YSR), the child behaviour checklist (CBCL) and the Harter's self-perception profile. We also used focus-group interviews on all 57 parents by the end of the treatment period. RESULTS: The study revealed some improvements in the level of physical performance. The most striking finding, however, was the lasting effect on behavioural and emotional parameters and the children's self-esteem. CONCLUSION: Training in a warm climate may explain some of this positive effect. However, based on the focus-group interviews and its quantitative findings a more plausible explanation may be the interaction in a social setting with others in a similar situation.


Subject(s)
Cerebral Palsy/psychology , Cerebral Palsy/rehabilitation , Climatotherapy/statistics & numerical data , Physical Therapy Modalities , Activities of Daily Living , Adolescent , Cerebral Palsy/physiopathology , Child , Climatotherapy/methods , Female , Humans , Male , Peer Group , Self Concept , Social Behavior , Spain , Tropical Climate
6.
Dev Med Child Neurol ; 42(4): 266-70, 2000 Apr.
Article in English | MEDLINE | ID: mdl-10795566

ABSTRACT

The main purpose of the study was to estimate the prevalence of psychiatric diagnoses in children with mental retardation (MR) (IQ < or = 70). All children born between 1980 and 1985 (N=30037) in Akershus County, Norway, were screened for possible MR and assessed with either IQ tests or standardized developmental tests. A total of 178 children, 79 with severe mental retardation (SMR) (IQ<50) and 99 with mild mental retardation (MMR) (IQ 50 to 70) were included for further study. Psychiatric symptomatology was assessed as a standard part of the neurodevelopmental examination, which included a semistructured parent interview, a clinical child interview, and retrieval of the charts of previous child psychiatric examinations. Psychiatric diagnoses were classified according to the International Classification of Disease (ICD-10). In total, 65 (37%) of the total population with MR (95% confidence intervals 29 to 44) were registered to have psychiatric diagnoses, the most common being hyperkinesia (n=28) and pervasive developmental disorder (n=15). Psychiatric diagnoses were present in 42% of the population with SMR and 33% of the population with MMR (p=0.4). Of all children found to have a psychiatric diagnosis, approximately one-third had previously been examined by a child psychiatrist and indicated a previously unrecognized need for these services to children with MR.


Subject(s)
Affective Symptoms/epidemiology , Child Behavior Disorders/epidemiology , Intellectual Disability/epidemiology , Adolescent , Affective Symptoms/diagnosis , Affective Symptoms/genetics , Child , Child Behavior Disorders/diagnosis , Child Behavior Disorders/genetics , Comorbidity , Cross-Sectional Studies , Female , Humans , Incidence , Intellectual Disability/diagnosis , Intellectual Disability/genetics , Male , Mass Screening , Norway/epidemiology
7.
Eur Child Adolesc Psychiatry ; 8(2): 78-85, 1999 Jun.
Article in English | MEDLINE | ID: mdl-10435456

ABSTRACT

To explore the Harter Self-Perception Profile for Adolescents (SPPA) as an indicator of psychosocial outcome in adolescents with chronic physical disorders, we administered the questionnaire along with other well-established measures of psychosocial outcome (the semistructured Child Assessment Schedule (CAS) interview and the Youth Self Report (YSR) and Child Behavior Checklist (CBCL) questionnaires) to one group of diseased adolescents with good psychosocial adjustment (juvenile chronic arthritis, JCA) and one with a high level of psychosocial maladjustment (anorectal anomalies, ARA). The adolescents with ARA had significantly lower scores of global self-worth, school competence, and social acceptance as compared to the adolescents with JCA. However, global self-worth in neither group was impaired as compared with that of the general Norwegian adolescent population. Perceived physical appearance was the single self-concept domain accounting for the variance in global self-worth (R2 = 0.71, p < 0.001). Among the other measures of psychosocial outcome, global self-worth was most strongly related to mood according to the CAS interview (r = -0.53, p < 0.001) and to the YSR internalizing score (r = -0.53, p < 0.001). Our findings indicate that the SPPA has limited ability to identify chronically diseased adolescents with adverse psychosocial outcome.


Subject(s)
Adaptation, Psychological , Arthritis, Juvenile/psychology , Health Status , Self Concept , Social Adjustment , Social Behavior , Surveys and Questionnaires , Adolescent , Adolescent Behavior/psychology , Child , Chronic Disease , Female , Humans , Male
8.
World J Urol ; 17(4): 239-48, 1999 Aug.
Article in English | MEDLINE | ID: mdl-10460407

ABSTRACT

Although there has been only limited clinical research on mental or psychosocial implications in patients with bladder exstrophy and epispadias, questions have been raised as to whether their life is of such questionable quality that a termination of pregnancy should be considered. A systematic overview of outcome studies published over the past three decades was carried out. In all, 1208 abstracts and 52 papers were read; only 10 (0.8%) papers focused on the mental or psychosocial outcome, but with diverse findings. However, most of the studies suffered from serious methodological deficiencies. Physical, mental, and psychosocial problems revealed in studies with reliable and valid instruments have clinical implications and underline the need for the further development of surgical and psychosocial interventions. Multicenter studies with a multimodal, prospective, and longitudinal design, based on semistructured interviews and specific questionnaires related to the disorder, are appropriate.


Subject(s)
Bladder Exstrophy/psychology , Epispadias/psychology , Mental Health , Quality of Life , Abortion, Therapeutic , Adaptation, Psychological , Female , Humans , Male , Outcome Assessment, Health Care , Pregnancy , Social Adjustment
9.
J Urol ; 159(5): 1684-9; discussion 1689-90, 1998 May.
Article in English | MEDLINE | ID: mdl-9554394

ABSTRACT

PURPOSE: We report the long-term somatic outcome, mental health and psychosocial adjustment in adolescents with bladder exstrophy and epispadias. MATERIALS AND METHODS: A total of 22 adolescents 11 to 20 years old (median age 14.5), including 19 with bladder exstrophy and 3 with epispadias, were assessed for urogenital status, stoma, renal and bowel function, anorectal physiology, mental health and psychosocial functioning by physical examinations, semistructured interviews and standardized questionnaires. The parents of 21 patients were interviewed and completed questionnaires. Information was also obtained on control groups. RESULTS: Of the 22 patients 9 (41%) had no urinary diversion and were urinary incontinent, 6 (27%) had persistent fecal staining and anal canal pressures that were lower than the controls, 10 (59%) were dissatisfied with the penile appearance and 11 (50%) met the criteria for psychiatric diagnoses. The main predictors of mental health were parental warmth and patient genital appraisal in the 11 to 14-year age group, and parental warmth and urinary continence function in the 15 to 20-year age group. Psychosocial dysfunction was predicted by fecal incontinence in the younger group and worries about future sexual relationships in the older group. CONCLUSIONS: The present multimodal outcome study revealed that adolescents with bladder exstrophy and epispadias had significant physical and mental problems. Genital malformation, and urinary and fecal incontinence may have a negative impact on mental health and psychosocial functioning. Our findings emphasize the need to include psychosocial experts on health care teams to reveal the amount of distress caused by these anomalies and to offer psychosocial support.


Subject(s)
Bladder Exstrophy/psychology , Epispadias/psychology , Mental Health , Adolescent , Adult , Bladder Exstrophy/complications , Bladder Exstrophy/physiopathology , Family Health , Female , Humans , Kidney/physiopathology , Male , Regression Analysis , Urinary Incontinence/etiology , Urodynamics
10.
J Pediatr Surg ; 33(3): 468-75, 1998 Mar.
Article in English | MEDLINE | ID: mdl-9537559

ABSTRACT

BACKGROUND/PURPOSE: Recent studies of adolescents with Hirschsprung's disease (HD) and low anorectal anomalies (LARA) showed persistent impairment of fecal control in both groups, but very different mental and psychosocial outcome. METHODS: To explore possible reasons for these differences, 19 adolescents with HD (aged 10 to 20 years; median, 16) operated on by the Duhamel technique were compared with 17 adolescents with LARA (aged 12 to 20 years; median, 15). The 36 adolescents were assessed for treatment procedures, bowel function, and mental and psychosocial outcome by data collected from medical records, physical examination, semistructured interview, and standardized questionnaires. The parents of 30 adolescents were also interviewed and completed questionnaires. RESULTS: Duration of anal invasive treatment procedure and current bowel function were associated with mental and psychosocial outcome. The treatment variable, duration of anal dilation, was the most significant predictor of the adolescents's mental health (R2 = .41, P < .01), whereas chronic family difficulties and parental warmth together with the current bowel function variables, fecal and flatus continence function, best explained the variance in psychosocial outcome (R2 = .77, P < .0001). Thus, the differences in treatment procedures and continence function between the HD and LARA groups may partially explain differences in mental and psychosocial outcome. CONCLUSIONS: These findings suggest that anal dilatation and continence dysfunction may have negative impact on mental health and psychosocial functioning. Indications for and ways of performing the procedure of dilation, and the treatment of persistent incontinence problems, are questioned.


Subject(s)
Adaptation, Psychological , Fecal Incontinence/psychology , Hirschsprung Disease/psychology , Mental Disorders/etiology , Parent-Child Relations , Rectum/abnormalities , Adolescent , Adult , Anal Canal , Child , Dilatation , Family Health , Fecal Incontinence/therapy , Female , Hirschsprung Disease/therapy , Humans , Interpersonal Relations , Male , Mental Health
11.
Pediatr Surg Int ; 13(1): 24-8, 1998 Jan.
Article in English | MEDLINE | ID: mdl-9391199

ABSTRACT

Long-term functional results, anal endosonography (AES), and anal canal manometry were recorded in 48 patients aged 10 to 24 years (median 18) operated upon with the Duhamel technique for Hirschsprung's disease; 60.4% had perfect fecal control, 31.3% occasional staining and/or gas incontinence, and 8.3% constant fecal soiling, and 10.4% complained of constipation. Compared to normals, the patients had significantly reduced anal canal resting and squeeze pressures. AES visualized scar tissue in both the internal and external anal sphincter.


Subject(s)
Hirschsprung Disease/surgery , Adolescent , Adult , Child , Endosonography , Fecal Incontinence/etiology , Female , Follow-Up Studies , Hirschsprung Disease/diagnostic imaging , Hirschsprung Disease/physiopathology , Humans , Male , Manometry , Postoperative Complications , Treatment Outcome
12.
Arch Dis Child ; 76(2): 100-6, 1997 Feb.
Article in English | MEDLINE | ID: mdl-9068296

ABSTRACT

Congenital intestinal malformations are uncommon and may pose lasting somatic difficulties. Patients with anorectal anomalies have a high frequency of persistent faecal dysfunction and psychosocial problems. This study examined whether adolescents with Hirschsprung's disease have more psychosocial problems than their healthy peers. Nineteen adolescents (mean age 15.7 years) with Hirschsprung's disease were assessed for bowel function, anorectal physiology, mental health, and psychosocial functioning by physical examinations, semistructured interview, and standardised questionnaires. The adolescents were compared with controls. The parents of 13 adolescents with Hirschsprung's disease were interviewed and completed questionnaires. Thirty two per cent of the adolescents with Hirschsprung's disease had significant impairment of continence, but no more psychopathology (16%) nor psychosocial dysfunction as a group than their healthy peers. Faecal incontinence was associated with poorer psychosocial functioning and parental criticism. The fact that a significant number of patients with Hirschsprung's disease have incontinence into adulthood indicates the need for parental counselling, encouraging realistic expectations about continence.


Subject(s)
Fecal Incontinence/psychology , Hirschsprung Disease/psychology , Mental Health , Social Adjustment , Adolescent , Adult , Family Health , Fecal Incontinence/etiology , Female , Follow-Up Studies , Hirschsprung Disease/complications , Hirschsprung Disease/physiopathology , Humans , Male , Parent-Child Relations , Pressure , Psychiatric Status Rating Scales , Rectum/physiopathology
13.
J Pediatr Surg ; 31(5): 638-43, 1996 May.
Article in English | MEDLINE | ID: mdl-8861471

ABSTRACT

Thirty-three adolescents (aged 12 to 20 years; median, 15) with a corrected low (n = 17) or high (n = 16) anorectal anomaly were assessed using anorectal physiological examination, semistructured interviews [Child Assessment Schedule [CAS]), and questionnaires (Child Behavior Checklist [CBCL], Youth Self-Report [YSR]). Seven patients, all of whom had low malformations, were totally continent. Twenty-three (70%) had persistent dysfunction with staining (n = 12) or intermittent/constant soiling (n = 11). Twenty-four (73%) had flatus incontinence. Fecal incontinence correlated negatively with anal canal resting pressure (r = - .58, P = <.001) and squeeze pressure (r = -.54, P < .01). Three adolescents had a permanent colostomy. Nineteen patients (58%) met the criteria for a psychiatric diagnosis, and impairment of psychosocial function was found in 24 (73%). The degree of psychosocial impairment correlated significantly with fecal incontinence (F = -.37, P < .05) and flatus incontinence (r = -.49, P < .01). Continence of flatus correlated significantly with mental health symptom scores (YSR: r = .52, P < .01; CAS:r = .53, P < .01). The findings indicated that, in addition to soiling, staining as well as fear of flatus are associated with psychiatric and psychosocial dysfunction among patients with anorectal malformations. Optimal treatment of patients with low and high anorectal anomalies requires somatic and psychological care and follow-up into adulthood.


Subject(s)
Adaptation, Psychological , Anus, Imperforate/surgery , Postoperative Complications/psychology , Sick Role , Social Adjustment , Somatoform Disorders/psychology , Adolescent , Adult , Anus, Imperforate/psychology , Child , Colostomy/psychology , Fecal Incontinence/psychology , Female , Follow-Up Studies , Humans , Male , Patient Care Team , Personality Assessment
14.
Acta Paediatr ; 83(2): 216-21, 1994 Feb.
Article in English | MEDLINE | ID: mdl-8193506

ABSTRACT

Ten adolescents, aged 12-16 (mean 14.5) years, with corrected low anorectal anomalies were assessed with regard to somatic condition, psychopathology and psychosocial functioning by semistructured interviews and questionnaires. Half of the patients still had a persistent dysfunction involving problems with constipation and/or soiling. Six of 10 adolescents met the criteria for a psychiatric diagnosis and had scores indicating mild to severe impairment of psychosocial function. Psychosocial functioning was correlated with chronic family difficulties. The findings are in contrast to previous studies and reveal hidden problems and unmet social needs. To optimize their mental health and psychosocial functioning, children with low anorectal anomalies need both somatic and psychosocial follow-up.


Subject(s)
Adaptation, Psychological , Anal Canal/abnormalities , Psychology, Adolescent , Rectum/abnormalities , Social Adjustment , Adolescent , Anus, Imperforate/psychology , Child , Congenital Abnormalities/psychology , Female , Follow-Up Studies , Humans , Male , Mental Health , Parent-Child Relations
15.
Tidsskr Nor Laegeforen ; 113(27): 3345-8, 1993 Nov 10.
Article in Norwegian | MEDLINE | ID: mdl-8273058

ABSTRACT

The evidence to date suggests a multi-factoral aetiology for encopresis, especially in cases where it is part of a psychiatric disorder. A physiological predisposition, the age at which bowel training is begun, the parent-child relationship and environmental stresses are influential. Thus no single treatment will suffice for the varieties of encopresis encountered in child psychiatric practice. This paper presents a programme used at a child psychiatric unit and embodying several methods of treatment: use of lavement, laxatives and softeners, counselling, behaviour modification and environmental therapy.


Subject(s)
Encopresis , Child , Child Psychiatry , Encopresis/diagnosis , Encopresis/psychology , Encopresis/therapy , Female , Humans , Male
16.
Tidsskr Nor Laegeforen ; 109(32): 3345-8, 1989 Nov 20.
Article in Norwegian | MEDLINE | ID: mdl-2595707

ABSTRACT

Limiting the use of contaminated syringes is an important step in the battle against hepatitis B and HIV epidemics. In 1987 a project, the first of its kind, was started in Larvik and the county of Vestfold in Norway. Syringe dispensers were put up in order to ensure that drug addicts had access to sterile syringes throughout the day and night. Looking back on one year's operation, the results and reactions are positive. The programme led to increased availability of syringes, reduced use of contaminated syringes, no pollution problems of significance and a decrease in the incidence of hepatitis B. We have also been able to channel increased information to a group hitherto difficult to reach. The involvement of the local public-health authorities has increased their contact with intravenous drug users. This has in turn laid the foundation for better future cooperation with this group. Setting up syringe dispensers has been shown to be an important factor in the battle against hepatitis B and HIV epidemics. This project has also provided a starting point for further work on drug abuse.


Subject(s)
HIV Infections/prevention & control , Hepatitis B/prevention & control , Syringes , Evaluation Studies as Topic , Humans , Norway
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