Clinical ethics, information, and communication: review of 31 cases from a clinical ethics committee.

OBJECTIVES: To summarise the types of case brought to the Clinical Ethics Committee of the National Hospital of Norway from 1996 to 2002 and to describe and discuss to what extent issues of information/communication have been involved in the ethical problems. DESIGN: Systematic review of case reports. FINDINGS: Of the 31 case discussions, (20 prospective, 11 retrospective), 19 cases concerned treatment of children. Twenty cases concerned ethical problems related to withholding/withdrawing of treatment. In 25 cases aspects of information/communication were involved in the ethical problem, either explicitly (n = 3) or implicitly (n = 22). CONCLUSION: Problems related to information/communication may underlie a classic ethical problem. Identification of these "hidden" problems may be important for the analysis, and hence, the solution to the ethical dilemma.

Ethical issues in parental decision-making. An interview study of mothers of children with hypoplastic left heart syndrome.

It is unclear how parents make life-and-death decisions on behalf of their children. To address this issue we interviewed 20 mothers whose children were born with hypoplastic left heart syndrome (HLHS), 10 whose child survived the operations and 10 mothers who chose comfort care. Semistructured interviews lasting from 1.5 to 3.5 h took place on median 4.6 (range 2.5-6) years after birth. The mothers who chose comfort care had more years of education (p = 0.03), reported a better childhood environment (p = 0.05) and had more often been employed in the healthcare services. The two groups described the information received in similar terms. The main motive for choosing surgery was that this was perceived to be the only acceptable choice. The motive for choosing non-treatment was to prevent the child from suffering. Lack of knowledge about long-term outcome, a state of shock and short time to deliberate limit the parents' possibilities for making autonomous choices. Autonomous decisions may be neither possible nor desirable for all parents. The care perspective, which highlights the parents' preferences resources and values, should represent ethical guidelines for care providers willing to dicide on behalf of the child.

[Organ transplantation in children]. / Organtransplantasjon hos barn.

Over a period of close to 30 years, children in Norway with organ failure have been offered the option of a transplanted organ. Kidney transplantations have been performed since 1971, heart and liver transplantations since 1983, when ciclosporin was introduced. We present a review of somatic aspects on kidney transplantation in children, with special emphasis on 136 renal transplantations in 107 Norwegian children, eight of whom have died. Organ transplantation has a major psychosocial impact on the child and the child's family. A review of the psychosocial aspects of organ transplantation is given.

Patient and parent experiences with health care services in pediatric rheumatology.

The health care received from first admission to a pediatric rheumatology clinic to 9-year follow-up was assessed in 109 patients with chronic inflammatory rheumatic diseases or chronic idiopathic musculoskeletal pain. Ninety-five of the patients had received hospital care after the first admission, of whom 53 patients > or = 18 years, 21 patients < 18 years, and 33 parents of patients < 18 years rated their degree of satisfaction with the health care from 0 to 10. Mean scores of satisfaction with different aspects of care ranged from 6.0 to 9.6. Among patients > or = 18 years, those with idiopathic pain were less satisfied than those with inflammatory rheumatic diseases on the availability of care (mean 6.4 vs. 8.5, p < 0.001), continuity of care (mean 6.5 vs. 8.4, p < 0.001), and empathy of the health care providers (mean 6.7 vs. 7.9, p <0.05). The diagnostic group and the occurrence of remission predicted the level of global satisfaction in patients > or = 18 years. In patients < 18 years, chronic family difficulties predicted patient satisfaction and physical disability and chronic family difficulties predicted parent satisfaction. In conclusion, most parents and patients with inflammatory rheumatic diseases were satisfied with the health care. However, some patients with idiopathic pain had unmet needs for care.

[Ethical dilemmas associated with hypoplastic left-heart syndrome]. / Etiske dilemmaer rundt hypoplastisk venstre hjerte-syndrom.

This questionnaire-based study elucidates the attitudes of Norwegian paediatricians and child cardiologists towards the surgical treatment of hypoplastic left-heart syndrome. During the last five years, 29 out of 53 Norwegian children have received surgical treatment in the USA or Switzerland. To date, approximately 50% of the children have survived three operations. In the present study, which comprises 26 of the physicians who are most frequently confronted with these children, none expressed that they were opposed to surgical treatment. Five of the 26 physicians stated that surgery should be obligatory, while 15 felt that this decision should be taken by the child's parents. The majority of the physicians inform the parents of the uncertain long-term prognosis and the possible need for future heart transplantation. The majority of the physicians also stated that it is difficult to give unbiased information. A surprisingly high number of the physicians consider the media and other parents to have as great an influence on the parents' choice of treatment as the paediatricians themselves have. Few Norwegian physicians considered the expenses related to the treatment to be the most difficult ethical dilemma. The majority of the physicians felt that the children should be treated in Norway or in another Nordic country.

Outcome and predictive factors in children with chronic idiopathic musculoskeletal pain.

OBJECTIVE: The aim of the present study was to describe the outcome and determine predictors of persisting chronic idiopathic musculoskeletal pain in children. METHODS: A prospective 9-year follow-up of 37 children with musculoskeletal pain of at least 3 months duration for which no physical origin could be found, was carried out. The study comprised those patients with idiopathic pain in a cohort of 117 first admissions to a pediatric rheumatology clinic; 72 patients with juvenile chronic arthritis (JCA) were used as a comparison group. RESULTS: Twenty-two patients (59%) still had chronic idiopathic musculoskeletal pain at the 9-year follow-up, while 15 patients no longer had pain after a median of 2.1 years (range 0.3-8.9). Compared with the patients with resolved pain, those with chronic pain had a longer disease duration before admission (median 1.4 versus 0.5 years, P < 0.01), more frequent generalised pain (86 versus 47%, P < 0.05), more intense pain (median 4.3 versus 0.5 cm VAS, P < 0.05), a lower parental education level (mean 10 versus 14 years, P < 0.01) and more chronic family difficulties (mean score 4.3 versus 2.9, P < 0.01) on first admission. Predictors of persistent pain were generalised pain on first admission (OR = 84) and a low mother's education level (OR = 0.31 per year of increased education). At follow-up, 16 patients (73%) with persistent chronic pain reported some disability according to the childhood or the adult Health Assessment Questionnaire (CHAQ/HAQ). The patients with chronic pain had as high a pain intensity (median 2.7 versus 2.0 cm VAS, NS), as much disability (median CHAQ/HAQ 0.3 versus 0.3) and as much impact on overall well-being (median 2.9 versus 3.2 cm VAS, NS) as patients with active JCA, but they had more fatigue (median 5.1 versus 1.3 cm VAS, P < 0.05), lower levels of psychosocial functioning (median score 74 versus 80, P < 0.05) and more chronic family difficulties (median score 3.3 versus 2.3, P < 0.001) than the JCA patients. CONCLUSION: Chronic idiopathic musculoskeletal pain in children had an unfavourable outcome in the present study, especially in children with generalised pain and a low parental education level.

Psychosocial outcome in juvenile chronic arthritis: a nine-year follow-up.

OBJECTIVE: To describe the long-term psychosocial outcome in a prospectively followed cohort of patients with juvenile chronic arthritis (JCA), to assess the associations between psychosocial outcome and disease variables and to explore family stressors as predictors of long-term psychosocial and physical outcome. METHODS: Fifty-two patients with JCA were assessed psychosocially at first admission to a pediatric rheumatology clinic and were reassessed 9 years later. Assessment methods included semi-structured psychiatric interviews and standardized parental questionnaires and self-reports. RESULTS: At follow-up, 9 patients (17%) fulfilled the criteria for a psychiatric diagnosis and 8 (15%) had mild to moderate impairment in psychosocial functioning (children's or adult Global Assessment Scale). Mental health and psychosocial functioning were significantly improved from the first hospital admission to follow-up. In patients < 18 years of age (n = 26), psychosocial functioning at follow-up correlated with physical disability according to the Childhood Health Assessment Questionnaire (r = -0.52, p < 0.01). Psychosocial outcome was unrelated to other measures of disease severity. Chronic family difficulties in the disease course predicted psychosocial functioning at follow-up in patients < 18 years old (R2 = 0.22). Chronic family difficulties at disease onset, together with gender and chronic family difficulties in the disease course, predicted psychosocial functioning at follow-up in patients > or = 18 years old (R2 = 0.61). Family stressors were unrelated to the physical outcome. CONCLUSION: The long-term psychosocial outcome was favorable in most of the patients. Psychosocial outcome was predicted by chronic family difficulties, but was not closely related to disease severity at follow-up.

Psychosocial factors in children with idiopathic musculoskeletal pain: a prospective, longitudinal study.

To explore the role of psychosocial factors in the development and persistence of idiopathic musculoskeletal pain (IMP) in children, 23 children with IMP and 52 children with juvenile chronic arthritis (JCA) were compared at first admission to hospital and at 9 y follow-up. Semistructured interviews were performed at both assessments. At first admission, the prevalence of psychiatric diagnoses was high both in patients with IMP and patients with JCA, but patients with IMP more often had pain models, reported more school stress and more often lived with one biological parent. At follow-up, overall psychosocial functioning and level of chronic family difficulties were improved in both groups, but patients with IMP had a higher prevalence of psychiatric diagnoses and more chronic family difficulties and life events than patients with JCA. The persistence of IMP at follow-up was related to pain models, school stress, less parental education and more chronic family difficulties at first admission. Findings support the association between psychosocial factors and childhood IMP.

[Consultation-liaison-psychiatry in Norway. Use of psychiatric services in somatic departmetns]. / Konsultasjon-liaison-psykiatri i Norge. Bruk av psykiatriske tjenester ved somatiske avdelinger.

The aim of the present study was to assess the use of consultation-liaison psychiatry in Norway, the resources used, the organisation and quality of the services, and whether there is a need to increase the services and improve the education. A questionnaire was mailed to all the major somatic and psychiatric departments in Norway. The questionnaires were completed and returned by 189 somatic departments (85%) and 74 psychiatric departments (55%). Each psychiatric department gives a median of two consultations each week (range 1-13). A minority of the consultations are with a specialist in psychiatry. About 60% of the psychiatric departments offer supervision of younger doctors. Psychiatric evaluation is seldom carried out when the somatic diagnosis is unclear. Most of the somatic departments are satisfied with the services. Both the somatic and psychiatric departments express a need for more extensive services and more education in medical psychology.

[Clinical ethics committees are tested in Norway]. / Kliniske etikkomiteer utprøves i Norge.

Health care ethics committees are now established at three hospitals in Norway as a result of a three year project in cooperation with the Centre for Medical Ethics and the Ministry of Health and Social Affairs. This article describes the project and discusses various difficulties regarding the establishment and functioning of health care ethics committees, such as their mandate and membership, the understanding of ethics and methodology, the role of ethical expertise and the relation between physicians' decision-making responsibility and a health care ethics committee.

Psychosocial function during treatment for familial hypercholesterolemia.

OBJECTIVE: To determine whether children treated for familial hypercholesterolemia (FH) have greater psychosocial dysfunction compared with their peers. CHILDREN: Children were 86 boys and 66 girls 7-16 years of age attending a lipid clinic. They were screened and instructed to follow a diet low in saturated fat and cholesterol 18 months to 9 years earlier (mean, 4 years), and their mean dietary intake, estimated by a quantitative food frequency questionnaire, was within recommended limits. One-fourth had lost a parent or had a parent who had had cardiovascular disease due to FH (parental disease group). METHODS: Results of the Child Behavior Checklist, Teacher's Report Form, and Youth Self-Report were compared with a population sample. A semistructured interview, the Child Assessment Schedule, was administered to the children with FH and a well-functioning comparison group from the population (epidemiologic cohort; n = 62). RESULTS: Psychosocial scores were similar in the children with FH and the population sample. The Child Assessment Schedule showed that, compared with the epidemiologic cohort, children with FH did not have increased symptoms in any area of function, and scores for family, mood, and expression of anger were lower (less symptomatic). The prevalence of psychiatric diagnoses was 10%, which was not greater than expected. Children from the parental disease group had higher symptom scores in the areas of school and expression of anger than the rest of the children with FH. Their mean Children's Global Assessment Score (CGAS, which gives average children scores of 70-79) was slightly lower (77 vs 79). Belonging to the parental disease group predicted a lower CGAS in multivariate regression analyses, as did male sex, parental divorce, and low parental educational level. These factors explained up to 19% (95% confidence interval, 9%-31%) of the variance in CGAS. CONCLUSIONS: We found that the prevalence of psychosocial dysfunction was not greater than expected in children treated for FH. Psychosocial function within the group was associated with the usual demographic characteristics and with the loss or disease of a parent, beyond the period of bereavement or immediately after the event.

[High technology in a family perspective]. / Høyteknologisk medisin i et familieperspektiv.

High technology medicine poses high demands for knowledge and technical competence. In addition, the hospital is expected to represent a model for total care where the "customers" also include family members, eg. parents and children. Both economic and human resources are needed in order to avoid negative after-effects and complications for both patient and family. High technology medicine also raises difficult ethical questions: How much decision-making should be left to parents? These problems are illustrated by clinical examples, and hospital-based ethical committees are suggested as a structure for the further efforts to improve ethical competency at the hospital and to find appropriate solutions for patients and their families in both the long and the short term.

Quantitative and qualitative assessments of pain in children with juvenile chronic arthritis based on the Norwegian version of the Pediatric Pain Questionnaire.

Quantitative and qualitative aspects of pain were studied using a standardized questionnaire (the Varni/Thompson Pediatric Pain Questionnaire--PPQ). Fifty-seven of 64 consecutive in- and out-patients (6-18 yrs) with juvenile chronic arthritis (pauciart. n = 27, polyart. n = 30) and 52 parents participated. The patients were examined by the same rheumatologist and randomly interviewed by either a disabled or a non-disabled person. Present pain, worst pain intensity and disease severity were scored (on visual analogue scales [10 cm. VAS]) by patients, parents and rheumatologist. Eighty-two percent of the children reported pain lasting from 30 min up to 24 h daily (mean 4.3 h). No significant differences were found between median pain scores of children, parents and the physician, but the correlations found between children's and parent's assessment of pain and assessment of disease severity were low, indicating that the two sets of raters did not agree to an acceptable level. Two-thirds of the adolescents reported that they would become more physically active if pain disappeared. Should the pain suddenly vanish, a positive change in family relationships was anticipated by one out of four patients. Forty-two percent of the patients thought it valuable to be interviewed by a disabled physician. The Norwegian Varni/Thompson PPQ is easy to administer to children down to six years and makes it possible to compare results internationally. Lack of agreement on the assessment of pain by a child and his/her parent indicates the need to interview both parties.

Collaboration between child psychiatry and paediatrics: the state of the relationship in Norway.

In Norway, the first paediatric department was founded in Oslo 100 years ago. The first child psychiatric department was opened in 1950. To assess qualitative and quantitative aspects of child psychiatric liaison work, questionnaires were sent to the heads of 25 paediatric departments and 53 child psychiatric units. Scarce child psychiatric resources were spent in paediatrics. The average score for satisfaction with collaboration was moderate (5.5 on a 10-cm visual analogue scale) and agreement between the parties was modest. Improvement will involve development of a common language and a shared model for understanding the psychosocial aspects of acute and chronic childhood illnesses. In-service training for paediatricians in child psychiatry and vice versa may help. Both parties indicated a need for more training in consultation/liaison and in multi-professional assessments and therapeutic interventions with children with physical illnesses.

A bio-psychosocial evaluation of ten adolescents with fibromyalgia.

A comprehensive assessment of 10 adolescents (mean age 15.7 years) fulfilling the ACR criteria for fibromyalgia, disclosed that 3 patients also had juvenile chronic arthritis. Based on semi-structured psychiatric interviews, testing and family assessments, 6 of the patients had a psychiatric diagnosis (over anxious and/or depressive disorders). The pain scores for the group (mean 5.0, SD 1.5) were significantly higher than for a comparison group of patients with juvenile chronic arthritis (mean 2.5, SD 1.7), (p < 0.01). Average IQ was normal (mean 102.3, SD 13.9), but striving for achievement and high parental expectations were evident in 8 families. Seven of the mothers and 3 of the fathers had chronic diseases. The frequency of individual and family stress indicates a need for psychosocial assessment and counselling soon after onset of symptoms. This study also serves as a reminder that the diagnosis of juvenile chronic arthritis does not exclude fibromyalgia.

[Conversion disorders in children and adolescents. A multidisciplinary approach]. / Konversjonsforstyrrelser hos barn og ungdom. En tverrfaglig tilnaerming.

Conversion disorders are characterized by change or loss of physical functions which indicates a neurological disorder (e.g. paralysis, sensory disturbances, or epilepsy like seizures). Clinical/neurological examination does not confirm any organic basis for the symptoms. Conversion disorders are more frequent in girls than in boys. They are rarely seen below the age of seven. A correspondence is often found between the personality of the child, (a conscientious attitude) and family relations. The families seem quite normal, but often have high expectations of their children, are sensitive to social stigmatization and have an underlying anxiety for health problems. A model is often found for the child's symptoms. Symptoms may be precipitated by an infection or a physical trauma. Sexual abuse is sometimes discovered. Multiprofessional assessment and treatment by a neuropediatrician, physiotherapist, child psychiatrist/psychologist and educational therapist may reduce "doctor shopping" and contribute to a favourable outcome.

A psychosocial follow-up of ten adolescents with low anorectal malformation.

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.

Juvenile chronic arthritis: a biobehavioral disease. Some unsolved questions.

This review presents a multidimensional biopsychosocial model suitable for evaluating medical and psychosocial empirical findings in juvenile chronic arthritis (JCA). The possible predisposing, provoking and modifying variables that have been assessed in studies of JCA are presented, together with suggestions for further research. The model is appropriate for structuring and validating data in future longitudinal studies and may also serve as a frame of reference for a multi-professional team approach in the care of rheumatic children and their families.