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PubMed2005

Development of a measure of the health-related quality of life of children in public care.

OBJECTIVES: To validate PedsQL for children in public care and develop an 'in-care' module. DESIGN AND SETTING: Questionnaire development and validation. Questionnaires were completed in placement. A total of 69 children in public care (aged 8-18 years) and their carers were recruited through routine paediatric assessments, and 662 children not in public care were recruited from local schools. MEASURES: Self- and proxy-report versions of PedsQL generic module and the 'in-care' module. RESULTS: Cronbach's alpha for the generic module ranged from 0.66 to 0.88 and from 0.74 to 0.90 for self- and proxy-report respectively. Lower scores were reported for children in care compared with peers living at home for proxy- and self-report. Proxy- and self-report correlation ranged from 0.43 to 0.60 (P < 0.001). Cronbach's alpha for the in-care module was 0.87 and 0.91 for self- and proxy-report respectively. Proxy- and self-report scores showed significant correlation with generic module scores. The highest correlations were seen with sub-scales measuring Psychosocial Functioning (e.g. Emotional Functioning: Pearson's r = 0.67 and 0.59, P < 0.001 for self- and proxy-report respectively). Proxy- and self-report correlation was 0.45 (P < 0.001). CONCLUSIONS: We found PedsQL generic module and the newly developed 'in-care' module to have excellent internal reliability for self- and proxy-report. Validity was established for both measures and significant correlation found between child and proxy ratings. Although further testing of the measures is recommended, both have potential value in assessing the success of placements and could provide a reliable and valid tool for individual patient analysis in clinical practice and for research with this group.

Activities of Daily Living↗

PubMed1986

Neurofibromatosis: relinquishing the masks; a quest for quality of life.

Neurofibromatosis (NF) or von Recklinghausen's disease is mankind's most common neurologic genetic disorder, occurring in one of every 3000 live births. While many individuals with NF suffer disfiguring, disabling, or life-threatening complications, NF is extremely variable in its symptoms, intensity, and progression. For many of its victims, NF is a pseudonym for uncertainty and physical and psychosocial havoc. John Merrick, 'The Elephant Man', endured one of the most severe cases of NF ever recorded. Merrick's rejection by post-Dickensian England forced him to become a sideshow circus attraction just to survive. The essence of nursing intervention with NF patients and their families engaged in the quest for quality of life is to restore them to optimal physical and psychosocial functioning, and, ideally, to help them utilize the experience for growth. Many individuals respond to the frustration of NF and society's reactions to the disorder by the wearing of psychological masks. Likewise, nurses may wear emotional masks as a defence against their own discomfort and fears concerning the disorders. Comprehensive nursing management of NF is realized only as nurses and patients relinquish their respective masks. This article examines the nurse's role in genetic disorders with special considerations presented by NF. Adaptation to NF involves coping with NF and its accompanying sequelae and coping with life as it is affected by NF. The concepts of 'chromosomal coping', 'genetophobia', 'genetic guilt, and 'genetic overload syndrome' are presented and analyzed utilizing the theoretical nursing frameworks of Imogene King and Sister Callista Roy.

Adaptation, Psychological↗

PubMed1990

Antiepileptic polypharmacy, psychosocial behaviour and locus of control orientation among mentally handicapped adults living in the community.

The relationship between psychosocial behaviour, antiepileptic regime (polytherapy compared to monotherapy) and seizure frequency was explored in a sample of mentally handicapped adults living in the community. Locus of control perceptions were studied in relation to seizure frequency. Antiepileptic polypharmacy was found to have a detrimental effect upon psychosocial functioning independent of seizure frequency, which is itself a risk factor for social disturbance; and external perceptions of locus of control predominated. The distribution of drugs used is reported. These results are discussed in the context of implications for future research in the areas of coping, mental handicap and antiepileptic pharmacotherapy.

Adult↗

PubMed2003

Enhancing outcomes in the management of treatment resistant depression: a focus on atypical antipsychotics.

Clinical trials indicate that over 50% of depressed patients show an inadequate response to antidepressant therapy, and that incomplete recovery from major depressive disorder (MDD) increases the risk of chronicity and recurrence. Recovery, complete remission of symptoms, and a return to baseline psychosocial function, should be the goal of therapy. Poor response to adequate antidepressant treatment has been termed treatment resistant depression (TRD). Issues such as adherence, missed diagnosis of psychotic depression, bipolar disorder, or comorbid anxiety must be investigated as reasons why patients have not responded to initial therapeutic strategies. Beyond ensuring optimal use of the index antidepressant, treatment strategies for TRD include switching to another antidepressant, and augmentation or combination with two or more agents. Since little comparative data exist it is important to consider side-effect burden, partial response, and previous medication history when deciding between strategies. In patients with TRD, adding or augmenting with lithium, tri-iodothyronine or atypical antipsychotics have demonstrated benefits. Augmentation with atypical antipsychotics, including risperidone, olanzapine, ziprasidone, and quetiapine, show promising results in terms of improving remission rates. Other interventions, including non-pharmacologic strategies and investigational physical treatments, have demonstrated some benefits, but availability and patient preference should also be considered. With today's therapeutic alternatives, full remission of depression is an attainable goal. For some patients, combination and augmentation strategies earlier in treatment may increase the likelihood of remission.

Antipsychotic Agents↗

PubMed2006

Can personality traits help us explain disability in chronic schizophrenia?

Psychotic features have been considered the main determinant of psychosocial function in schizophrenia. However, other variables are likely to affect dysfunction in these patients. The authors' hypothesis is that personality traits in outpatients with chronic schizophrenia differ from traits found in the healthy population and may be associated with disability in this disorder. A total of 62 patients with schizophrenia were evaluated with the Eysenck Personality Questionnaire (EPQ) and the Tridimensional Personality Questionnaire (TPQ). Psychotic features were measured with the help of the Positive and Negative Syndrome Scale (PANSS). Disability was assessed with the Disability Assessment Schedule (DAS). A total of 43 healthy subjects were used as controls for personality measurements. Normative data for the study population was also used to evaluate results in patients. Patients with schizophrenia had higher levels of neuroticism (median in percentile 65) and lower levels of extraversion (median in percentile 25) than the healthy population. Results of the TPQ showed higher harm avoidance and lower reward dependence levels compared to the healthy population. After multiple regression tests, negative symptoms were the strongest predictor of disability in patients with schizophrenia. Neuroticism contributed independently to the DAS overall behavior and global judgement subscales scores (more negative symptoms and higher neuroticism resulted in worse functioning), but not to the social role subscale. Outpatients with chronic schizophrenia showed high levels of neuroticism, harm avoidance, and introversion. Neuroticism significantly contributes to the long-term deficits found in patients with schizophrenia.

Adult↗

PubMed1988

Measuring psychosocial adaptation to diabetes in adolescence.

We have developed a psychometric test to assess psychosocial adaptation to diabetes in young people aged from 10 to 17 years. This includes subscales which describe emotional difficulty with, and attitude to, diabetes. The content of the scales was drawn from unstructured discussions with 27 young people with diabetes. The scales were piloted on two further unselected groups of adolescents (n = 50, n = 99) to examine their reliability, validity, and acceptability. Highly significant correlations were found between the results of the scales and measures of psychosocial function (p less than 0.001), parents' perceptions. Performance on the scale also correlated with a number of behaviour variables and differentiated those who were reported to be restricted by their diabetes (p less than 0.005) and those who had had a previous psychiatric referral (p less than 0.05). The scales appear reliable within the constraints of the small population examined.

Adaptation, Psychological↗

PubMed1989

Combat experience and emotional health: impairment and resilience in later life.

War's influence on emotional health includes potential psychological gains as well as losses. In a sample of 149 veterans from longitudinal samples at the Institute of Human Development, University of California, Berkeley, this study explores two questions on the legacy of combat in World War II and the Korean conflict. The first concerns the subjective experience or meanings of combat that veterans hold in later life, with particular attention to how such accounts are linked to the severity of combat and postwar adaptations. The second question links these accounts to the psychosocial functioning of veterans before the war and in later life using reports from veterans and their spouses and Q-sort ratings in adolescence and at age 40. Findings center on veterans of heavy combat. Compared to the noncombatants and light combat veterans, these men were at greater risk of emotional and behavioral problems in the postwar years. In mid-life, they hold mixed memories of painful losses and life benefits associated with military experience. Clinical ratings show that heavy combat veterans became more resilient and less helpless over time when compared to other men. As in the case of life events generally, short- and long-term effects may impair and enhance personal growth.

Adaptation, Psychological↗

PubMed1995

Personality disorders and psychosocial changes after intensive psychotherapy: a prospective follow-up study of an outpatient psychotherapy project, 5 years after end of treatment.

This report presents the results of a 7-year prospective outcome study designed to examine the psychosocial changes during and after therapy among 25 outpatients suffering from personality disorders and psychoses. The therapeutic approach was based mainly on object relations theory and psychodynamic self-psychology, and focused in particular on affect consciousness, parental images, self-image and interpersonal relations. Twenty patients completed the form which measured psychosocial changes during therapy, and 21 persons participated at follow-up. The data show statistically significant changes in the capacity to tolerate intimate relationships and actually establish such relationships, improved quality of contact in relationships with friends, a general raising of socioeconomic status and reduced use of ordinary health and social services. Both the global psychosocial outcome at follow-up as measured by HSRS and the general level of symptoms measured by SCL-90 suggest that 76% of the sample had reached a level of psychosocial functioning and adaptation that can be defined as "no-caseness".

Adult↗

PubMed1988

Relationships between hemispheric lateralization, sex hormones, quality of parenting and adjustment in 47,XXY males prior to puberty.

This paper reports findings of a study examining the degree to which intelligence, levels of sex-steroids and gonadotropins, quality of parenting and laboratory-based measures of left and right hemispheric specialization are associated with individual differences in psychosocial functioning in pre-pubertal 47,XXY males. The results indicate that activity level and freedom from tendencies towards withdrawal in these subjects are best predicted by the normality of their left hemispheric functioning.

Child↗

PubMed1992

Psychosocial adjustment in siblings of children with chronic life-threatening illness: a research note.

The psychosocial functioning of 10 siblings of children with chronic life-threatening illness and their parents was compared with 10 healthy matched controls. The main differences found were in family relationships, with the index siblings expressing more negative emotion in relation to their fathers than controls, index mothers being less involved in social activities and index fathers being less involved with the extended family. No significant differences were found in any of the measures of depression, anxiety and self concept. Index siblings expressed a number of other concerns such as a fear of the break up of their family after the sick child died. The need for increased awareness of the welfare of healthy siblings as well as closer involvement of the fathers is discussed.

Adolescent↗

PubMed1996

Body size, parental appraisal, and self-esteem in blind children.

This study of self-esteem, body size, and parental views in 9-11-year-old blind children found positive views about self-presentation with no sex or weight differences. Lower self-esteem emerged in children who thought they were judged by parents as too thin but being fat, being appraised as fat, or believing they are thought of as fat by parents, showed no effect on self-esteem. Their responses to questions about the causes, characteristics, and psychosocial functioning of obesity suggest an innate desire and possible need for a more robust stature, a bigger presence, and a feeling of weight which appeared to supercede any acquired negative attitudes to fatness.

Blindness↗

PubMed1989

Instrumental activities of daily living in two patient populations, three months and one year after a stroke.

The pattern of instrumental activities of daily living (I-ADL) such as household work, locomotion, psychosocial functions and intellectual activity was investigated in two groups of patients, three months and one year after a stroke. Group A (n = 78 at three months, n = 63 at one year) had received conventional care during the hospital period, while Group B (n = 129 at three months, n = 120 at one year) had taken part in a more individualised care programme. There was no difference in I-ADL performance between the two groups on the follow-up occasions according to interviews. The individualised care programme in the present study did not result in any significant differences in long-term functional improvements, although the mortality rate was somewhat lower in Group B. The patients of both groups were dependent to a large extent on somebody else in all activities except locomotion. Three-fourths of the patients, however, declared that they were satisfied with their health and life situation, in spite of their handicap.

Activities of Daily Living↗

PubMed2005

Empowerment in people with a mental illness: reliability and validity of the Swedish version of an empowerment scale.

Empowerment has become a widespread concept in various social policy contexts referring to different marginalized groups. Empowerment has also been focused within the mental health field although little empirical research exists. The aim of the present study was to investigate internal consistency and construct validity of the Swedish version of an empowerment scale developed for people with a mental illness, Making Decisions. Ninety-two persons were subject to an interview also comprising assessments of quality of life, needs for care, psychiatric symptoms, psychosocial functioning, aspects of the social network, rejection experiences and attitudes of devaluation/discrimination towards people with mental illness. The results showed that the overall scale and the subscales had a good internal consistency, except for the subscale power-powerlessness. A factor analysis revealed two superordinate factors, self-esteem and activism and community and power, with a satisfactory internal consistency. These two factors showed a good construct validity with expected associations to validation measures. Stigma was most markedly associated with self-esteem and activism, and a higher level of education was most strongly associated with community and power. In conclusion, the Swedish version Making Decisions may well be used in further studies of empowerment among people with a mental illness.

Follow-Up Studies↗

PubMed2006

Patterns of responses on health-related quality of life questionnaires among patients with HIV/AIDS.

BACKGROUND: Health-related quality of life (HRQoL) has become an important facet of HIV/AIDS research. Typically, the unit of analysis is either the total instrument score or subscale score. Developing a typology of responses across various HRQoL measures, however, may advance understating of patients' perspectives. METHODS: In a multicenter study, we categorized 443 patients' responses on utility measures (time-tradeoff, standard gamble, and rating scale) and the HIV/AIDS-Targeted Quality of Life (HAT-QoL) scale by using latent profile analysis to empirically derive classes of respondents. We then used linear regressions to identify whether class membership is associated with clinical measures (viral load, CD4, time since diagnosis, highly active antiretroviral therapy [HAART]) and psychosocial function (depressed mood, alcohol use, religious coping). RESULTS: Six classes were identified. Responses across the HAT-QoL subscales tended to fall into 3 groupings--high functioning (Class 1), moderate functioning (Classes 2 and 3), and low functioning (Classes 4 to 6); utility measures further distinguished individuals among classes. Regression analyses comparing those in Class 1 with those in the other 5 found significantly more symptoms of depression, negative religious coping strategies, and lower CD4 counts among subjects in Class 1. Those in Class 5 had been diagnosed with HIV longer, and members of Class 6 reported significantly less alcohol consumption, had higher viral loads, and were more likely to receive HAART. CONCLUSION: Patients with HIV respond differentially to various types of HRQoL measures. Health status and utility measures are thus complementary approaches to measuring HRQoL in patients with HIV.

Adaptation, Psychological↗

PubMed1980

An objective method for the assessment of psychological and social problems among epileptics.

Numerous investigators have identified psychological and social problems among epileptics and in many instances, these appear to be more debilitating than the seizures themselves. However, assessment of these problems has most frequently been done by subjective means and when objective tests have been used, they were almost always developed for and standardized on populations other than epileptics. The development of the Washington Psychosocial Seizure Inventory (WPSI) is presented in this paper. After pilot work, 127 adult epileptics were evaluated for psychosocial problems and they completed the 132-item Inventory. Professional assessment of difficulties was made with respect to family background, emotional adjustment, interpersonal adjustment, vocational adjustment, financial status, adjustment to seizures, and medical management. Finally, an assessment of overall psychosocial functioning was made. Through an item-by-item correlation technique, scales were empirically developed for each of these areas and a profile was produced which gives both the absolute and the relative extents of difficulties for each patient with respect to each area. Potential applications for the WPSI are presented.

Adaptation, Psychological↗

PubMedDate not supplied

Infarction after surgery for focal epilepsy: manipulation hemiplegia revisited.

The success of surgery for seizure focus resection depends on postoperative reduction or disappearance in number of seizures, improvement in psychosocial functioning, and low morbidity and mortality. Permanent neurologic sequelae are most often not discussed in this context. Deficits more than a superior quadrantanopsia are not expected after temporal lobectomy. Four cases of ischemic stroke after seizure focus resection, each distant from the site of tissue removal, are reported. These are the first such radiologically documented reports of "manipulation hemiplegia." The permanent neurologic deficits are not attributed to resected tissue or edema.

Adolescent↗

PubMed1996

Quality of life in adult patients with epilepsy.

Quality of life (QOL) must be determined from the patients' subjective viewpoint. To determine QOL in epilepsy, it is necessary to use disease-specific scales. We introduced the Side Effects and Life Satisfaction (SEALS) scale to Japan and performed a comparative study on adult patients with epilepsy and normal subjects. The results for patients with epilepsy were determined by the number of prescribed antiepileptic drugs (AEDs), the total dosage, and the type of epilepsy. Problems in patients with epilepsy were expressed by vertically crossing lines. A horizontal line expressed the severity of disease, and a vertical line expressed the psychosocial functioning. Therefore we cannot separate the severity and QOL when considering the influence of epilepsy disorders on individual patients. These two components compose the biphasic dimensions of QOL and thus are analyzed coincidentally. The concepts of QOL and comprehensive management in epilepsy are closely related, but the fundamental viewpoints are located at opposite positions. The former is based on the physicians' viewpoints and the latter on the patients' viewpoints. Although ideally these two concepts should be in harmony, they are in reality frequently dissociated. In comprehensive management, the treating physician must vigorously consider the influence of therapy on the patients' QOL.

Adaptation, Psychological↗

PubMed1997

Quality of life of people with epilepsy: a European study.

PURPOSE: To study the impact of epilepsy and its treatment on people with epilepsy in Europe. We therefore aimed to collect data from as many countries as possible. METHODS: Clinical and demographic details and information about psychosocial functioning was collected using self-completed questionnaires mailed to members of epilepsy support groups. RESULTS: Quality of life data was collected from >5,000 patients living in 15 countries in Europe. Over a third of all respondents had frequent seizures, and a fifth believed that their seizures were not well enough controlled by antiepileptic medication. Reported levels of side effects from medication were high. A significant number of respondents reported changing their medication because of side effects or poor control. Respondents reported that epilepsy and its treatment had a significant impact on a number of different aspects of their daily lives. Half of all respondents felt stigmatised by their epilepsy. There were significant differences by seizure type and frequency in the way respondents scored on measures of the perceived impact of their condition, the stigma associated with it and their health status as measured by a generic scale, the SF36. CONCLUSIONS: This study confirms the findings of previous smaller-scale studies that reducing side effects and achieving better control of seizures are key to improving the quality of life of people with epilepsy, as is reducing the stigma and handicap associated with it.

Age of Onset↗