L. von Essen

A comprehensive assessment of satisfaction with care: preliminary psychometric analysis in French, Polish, Swedish and Italian oncology patients

Satisfaction with care may be closely related to quality of life in cancer patients. This evaluation is especially relevant when quality of care is considered. The present study assessed whether equivalent scaling properties could be found in a comprehensive assessment of satisfaction with care (CASC) administered in cancer patients from French, Polish and Swedish oncology settings, in comparison to the scaling properties previously evidenced in the CASC with an Italian sample. A total of 140, 186 and 133 oncology patients were approached in France, Poland and Sweden, respectively. Specific items in the CASC were identified as consistently omitted across country samples. Multitrait scaling analysis on an item-grouping adapted for the French, Polish, Swedish and Italian samples provided excellent internal consistencies and convergent validity estimates. Discriminant validity proved less satisfactory, evidencing overlap between hypothesised care dimensions across country samples. The identification of omitted or overlapping items will lead to the design of a revised CASC version to further test in larger cross-cultural samples.

Importance-satisfaction discrepancies are associated with health-related quality of life in five-year survivors of endocrine gastrointestinal tumours

Background: Little is known about the health-related-quality of life (HRQoL) of patients with endocrine gastrointestinal tumours. In this study, HRQoL was investigated in long-term survivors of e ...

Are there any positive consequences of childhood cancer? A review of the literature

The aim was to investigate whether there are any positive consequences of childhood cancer. Studies published 1990–2005 reporting survivors’ descriptions of positive consequences of childhood cancer were identified through a search in the databases CINAHL, PsycINFO, and PubMed. According to a manifest content analysis, positive consequences were referred to three themes: life values, relations to others, and relation to self. A second search in the same databases was conducted to identify studies investigating whether survivors of childhood cancer differ from comparison groups with regard to variables assigned to these themes. In these studies, no conclusions about positive consequences with regard to the theme life values can be drawn, as only one study was identified. In addition, only a small minority of findings from comparative studies indicate that childhood cancer has any positive consequences with regard to relations to others and relation to self. A majority of the results indicate that survivors do not differ from comparison groups, whereas some findings highlight that friendship and marital status are areas of concern, and parenthood and sexuality are areas of potential concern. It is recommended that survivors of childhood cancer are followed up by a multi-professional team, focusing not only on the survivors’ health status but also on relations to family, friends, and partners.

Development of a tool to measure the life situation of parents of children with cancer

The aim of this study was to test the validity and reliability of the recently developed Life Situation Scale for Parents (LSS-P) among parents of children with cancer. One hundred and ten parents of seventy-four children and adolescents who visited three paediatric wards in Sweden filled out three instruments: The LSS-P, the Quality of Life Scale and the Family Support Scale. The reliability co-efficient, Cronbachs alpha, was found to be 0.82 for the LSS-P. A factor analysis with orthogonal varimax rotation of 37 items of the LSS-P gave twelve factors. A higher order factor analysis reduced the factors to four (Care, Well-being, Social life and Preparedness), explaining the underlying dimensions to 57.9%. The total LSS-P correlated significantly with the Quality of Life Scale, and the higher order factor Care with the Family Support Scale. The LSS-P discriminated, in some aspects, between two-parent and single parent families and between parents visiting the ward for treatment or check-up. The conclusion is that this first version of the LSS-P was valid and reliable (internal consistency) to a certain extent, but that the instrument should be tested on larger samples and during different phases of the disease.

Findings on how adolescents cope with cancer--a matter of methodology?

Objectives: The various conclusions drawn from previous studies on how adolescents cope with cancer might partly be explained by methodological issues. The aim was to explore how adolescents recently diagnosed with cancer report that they cope with disease‐ and treatment‐related distress in response to closed‐ and open‐ended questions, respectively.

The relationship between fear and pain levels during needle procedures in children from the parents' perspective.

The primary objective was to determine the levels of and potential relationships between procedure‐related fear and pain in children. Secondary objectives were to determine if there are associations between the childs age and sex, diagnostic group, time since diagnosis, time since last needle insertion, cortisol levels and the parents fear level in relation to fear and pain.

Empirically derived psychosocial states among adolescents diagnosed with cancer during the acute and extended phase of survival

BACKGROUND To, during the acute and extended phase of survival, identify psychosocial states among adolescents diagnosed with cancer and to analyse these in relation to demographic and clinical characteristics and self-reported depression. PATIENTS AND METHODS Participants completed the Hospital Anxiety and Depression Scale and two subscales, Vitality and Mental Health, in the SF-36 4-8 weeks (T1) (n = 61), 6 (T2) (n = 57), 12 (T3) (n = 50), and 18 (T4) months (n = 48) after diagnosis. I-State as Object of Analysis was used to identify a finite set of states based on three dimensions. Cluster analysis was carried out using Wards method. RESULTS Five states were obtained: psychosocial dysfunction (state A) and poor (B), incomplete (C), good (D), and excellent (E) psychosocial function. At T1, more adolescents than expected by chance were in states A (P < 0.05) and C (P < 0.01) and fewer in states D (P < 0.05) and E (P < 0.001). At T4, more adolescents than expected by chance were in state E (P < 0.001) and fewer in state C (P < 0.05). Female gender and being in late adolescence when diagnosed is related to worse psychosocial function. CONCLUSION The findings provide support for subgroups of adolescents whose level of vitality, mental health, and anxiety differ during the acute and extended phase of survival of cancer. Clinical interventions tailored to the level of impairment as determined by the clusters may result in better psychosocial outcomes.

Health-related quality of life in five-year survivors of endocrine gastrointestinal tumours

BACKGROUND Little is known about the health-related-quality of life (HRQoL) of patients with endocrine gastrointestinal tumours. In this study, HRQoL was investigated in long-term survivors of endocrine GI tumours. PATIENTS AND METHODS A questionnaire including the EORTC QLQ-C30 and ratings of importance of and satisfaction with a variety of HRQoL aspects was mailed to patients with carcinoid tumours (n = 64), or endocrine pancreatic tumours (EPT, n = 55). Median time since diagnosis was 120 months (range 60-360). The majority of patients (77 of 119) had ongoing treatment. RESULTS The EORTC QLQ-C30 ratings suggest that in spite of a long disease duration and treatment, patients perceived their HRQoL as relatively good. There were no major differences in HRQoL ratings between patients with carcinoid tumours and those with EPT. Patients whose ratings of importance was higher than their ratings of satisfaction with a specific HRQoL aspect also evidenced a low HRQoL for that aspect. CONCLUSIONS The results indicate that survivors of endocrine GI tumours enjoy a relatively good HRQoL and suggest that importance > satisfaction discrepancies identify patients with a low quality of life.

539 Psychological functioning in children with cancer

Psychological functioning in children 0–18 years old, having various types of cancer, and their families visiting the pediatric oncology unit at Uppsala Akademiska Hospital, during the spring 1995, is investigated. Patients at least 8 years complete questionnaires measuring self concept (″I think I am″); depression (CDI) and anxiety (RCMAS). Patients of age 11 or older also complete YSR measuring social/behavioral problems and those >12 years also complete A-COPE assessing coping. Both parents report social/behavioral problems for children 4–18 years (CBCL). For patients 8–12 years old parents assess the childs coping (CHIC). Patient and parent general background data and patient disease related medical data is also collected. Anxiety, depression, behavioral/social problems, coping and self concept for the various diagnosis, disease stages/phases and ages will be presented as well as differences/associations between: (1) patient (11–18 years) and parent reports of behavioral/social problems, and (2) mother and father reports of the childs behavioral/social problems (4–18 years) and coping (8–12 years).

1441 Perceptions of the importance of caring behaviours and patient anxiety and depression levels in cancer patient-staff dyads

Perceptions of the importance of caring behaviours (CARE-Q) and levels of patient anxiety and depression (HAD scale) were studied in 53 cancer patient-staff dyads. Patients and staff disagreed on the importance of caring behaviours on 4/6 caring dimensions and did not agree on their importance for individual patients. Patients regarded the caring dimension “Anticipates” as most important, while staff perceived “Comforts” as having the highest importance. Although the staff perceived patient anxiety to be higher than did the patients themselves ( P P P