Marianne Carlsson

Symptom distress and life situation in adolescents with cancer

Having a life-threatening disease like cancer during adolescence poses a number of problems. The purpose of this study was to identify the adolescents own experience of areas of the life situation affected by the disease and problems related to it. Ten adolescents with varying diagnoses and treatment were interviewed. They also completed a quantitative measurement of problems. The result shows eight domains and 24 subdomains influencing the experience of life situation. Those were disease and treatment (side effects, isolation, medical procedures), identification (others are ill, appearance), feelings and reactions (mood, self-image, meaning, hope), coping (positive thinking, distraction, positive effects), togetherness (family, friends, school), support (family and friends, the youth association, professional support), reactions of the families (parents, siblings), and quality of care (professionalism, information, organization, equipment). The problems mentioned in the interviews are also compared with the quantitative measurement used. The adolescents mentioned 77 problems in the interviews, of which 17 were not on the list of problems. Of those 17, seven dealt with physical problems, and six were problems concerning the quality of care. They ranked wanting and depending on parents as the worst problems for themselves from the list of problems.

Psychological and psychosocial aspects of breast cancer and breast cancer treatment. A literature review.

The aim of the investigation was to study psychological and psychosocial aspects of breast cancer. A literature search was done covering the period 1989–1992. The following research areas were studied: the relationship between psychological characteristics and breast cancer, and between psychosocial interventions and breast cancer; quality of life after breast cancer surgery and treatment; and the relationship between social support and breast cancer. The results showed that the medical community is divided into “believers” and “nonbelievers” with respect to whether or not psychosocial factors influence breast cancer outcomes. One of the best predictors of a womans postcancer adjustment is her psychological state before the breast cancer. The results also showed that the difference in psychological outcome between mastectomy and breast-con-serving surgery was small and nonsignificant. Another finding was that the social context and social support from partner, family, friends, relatives and medical professions are important for survival. In conclusion, methodological problems were common in studying psychological and psychosocial aspects of breast cancer.

Evaluation of Quality of Life/Life Satisfaction in Women with Breast Cancer in Complementary and Conventional Care.

The aim was to study the perceived quality of life/life satisfaction in a sample of women with breast cancer who were treated in a hospital with alternative/complementary care and the same variables in individually matched patients who received only conventional medical treatment. A non-randomized controlled trial design with repeated measurements was used. Sixty women with breast cancer treated with anthroposophic medicine (ABCW) and 60 with conventional medicine (CBCW) were included and 36 matched pairs took part on all occasions. The quality of life was measured by the EORTC QLQ-C30 and the Life Satisfaction Questionnaire (LSQ). The comparisons were calculated as effect sizes (ES). The women in the ABCW group reported small or moderate effects, expressed as ES, on their quality of life/life satisfaction compared to their matched “twins” in the CBCW group at the 1-year follow-up in 15 out of 21 scales/factors. It was concluded that the women who had chosen anthroposophic care increased their perceived quality of life/life satisfaction according to the methodology of the study.

Measurement of quality of life in women with breast cancer. Development of a Life Satisfaction Questionnaire (LSQ-32) and a comparison with the EORTC QLQ-C30

The purpose was to develop and validate a new instrument suitable for measuring perceived quality of life in women with breast cancer. The instrument is to be used within conventional cancer therapy as well as in complementary care, and is called the LSQ-32 (Life Satisfaction Questionnaire). The subjects were 362 women with breast cancer in all cancer stages. Cronbachs α reliability coefficient of the LSQ was 0.89. The construct validity was estimated by a principal component analysis. Six orthogonal factors were identified: (1) ‘Quality of family relation’, (2) ‘Physical symptoms’, (3) ‘Socioeconomic situation’, (4) ‘Quality of daily activities’, (5) ‘Sickness impact’ and (6) ‘Quality of close friend relation’. The criterion-related validity was estimated by comparing the LSQ-32 and the EORTC QLQ-C30. The scales/items of the EORTC QLQ-C30 were represented in the LSQ-32, but the factors ‘Quality of family relation’ and ‘Quality of close friend relation’ were not found in the EORTC QLQ-C30. It was concluded that the LSQ-32 as well as the EORTC QLQ-C30 are valuable tools in the measurement of quality of life in women with breast cancer. The LSQ-32, however, also contains an existential factor.

Working with families of persons with aphasia: a survey of Swedish speech and language pathologists

Purpose. The overall aim was to investigate how speech and language pathologists (SLPs), in Sweden are working with people with aphasia and their families and what their professional experiences are. Method. A cross-sectional study with a descriptive and comparative design. An 84-item study-specific questionnaire was sent to all Swedish SLPs, affiliated to SLOF (the Swedish professional association and trade union). Results. The response rate was 72.5% (n = 758). Thirty per cent worked with people with aphasia and typically met with their families. The participants considered the involvement of families as very important, especially concerning providing information of aphasia and training of communication strategies. However, involvement of families was limited due to a shortage of time, but also to perceived limited skill and knowledge. Conclusions. There was an evident discrepancy between what the participants claimed to be an important part of their work, and their actual practice. It is suggested that to facilitate family intervention, this should be explicitly expressed in both local and national guidelines. The content of the SLP education, and the need of further education and implementation of new knowledge into clinical practice also requires consideration.

Self-perceived physical, psychologic, and general symptoms in survivors of testicular cancer 3 to 13 years after treatment.

Due to the large group of patients with advanced testicular cancer now being cured, it is important to identify the men who are at risk of deteriorated health. The purposes of this study were: (1) to delineate and compare frequency of self-perceived physical, psychologic, and general symptoms in men treated for testicular cancer with those of a general population sample and (2) to compare self-perceived physical, psychologic, and general symptoms in relation to secondary Raynaud phenomena, sexual dysfunction, infertility, and self-perceived attractiveness in different treatment modalities. The subjects were 277 survivors of testicular cancer (M = 42.2 years) who had completed a self-reported questionnaire (75.5% response rate). A population survey comprising 392 men was used as a comparison group (M = 45 years). The result demonstrated that although survivors of testicular cancer as a group reported significantly less frequency of backache, leg pain, cough, and eye problems than did the general population sample, they described that they significantly more often felt cold. Men reporting secondary Raynaud phenomena, infertility, and/or feeling less attractive had experienced significantly more self-perceived symptoms. Oncologist nurses could play an important role in psychologic counseling for those men.

Factors of significance for mobility in children with myelomeningocele.

Aim: To investigate neurological impairment, hand function and cognitive function in a group of children with myelomeningocele, in order to identify factors of significance for independent mobility and the physical assistance required for mobility in daily activities. Methods: The study material comprised 32 children, aged 6–11 y and without mental retardation. Mobility was assessed with the Pediatric Evaluation of Disability Inventory, scored as caregiver assistance. Statistical differences and correlations between the caregiver assistance scores and the selected variables were analysed. Results: Nine children scored independent mobility. The independent children had better hand coordination (p= 0.004) and walking ability (p= 0.01), lower cele levels (p= 0.011), higher performance IQ (p= 0.027), better visuospatial function (p= 0.029) and executive function (p= 0.037) than the others. The caregiver assistance scores were lower for both the children with early and severe symptoms of brainstem dysfunction and the children with scoliosis. Statistically significant correlations were found between the need for caregiver assistance and reduced walking ability, high cele level, poor hand strength and coordination, visuospatial function, executive function and performance IQ. In the subgroup of children who needed a wheelchair or walking aids, hand strength was the only variable significantly correlated with caregiver assistance (rs= 0.703, p= 0.000).

Psychometric assessment of the Life Satisfaction Questionnaire (LSQ) and a comparison of a randomised sample of Swedish women and those suffering from breast cancer.

In a previous study, the Life Satisfaction Questionnaire (LSQ) was developed especially for women with breast cancer. The aim of the present study was to assess the psychometric properties of the LSQ in a randomized sample of Swedish women and to compare the perceived quality of life with that of women suffering from breast cancer. Another aim was to relate the result to educational background. A total of 257 women aged 20–80, randomly selected from the Swedish population register, answered the LSQ. The result was compared with that from 362 women aged 27–78 suffering from breast cancer. The construct validity was calculated by a principal component analysis, and the reliability by Cronbach α-coefficients. It was concluded that the LSQ has acceptable validity and reliability. The result also showed that the women with breast cancer rated their perceived quality of life higher than women in general with respect to the quality of personal relations and the quality of daily activities, but lower for physical symptoms. In the comparison with respect to educational background, women with university education rated their quality of life higher than women with other types of education. The testing of the LSQ will continue.

Quality of Life Varies With Gender and Age Among Adults Treated for Unilateral Cleft Lip and Palate

Objective To evaluate health-related quality of life among adults treated for unilateral cleft lip and palate and to investigate whether patients were affected differently depending on gender and age. Design Cross-sectional population study with long-term follow-up. Patients/Settings All unilateral cleft lip and palate patients born 1960–1987 and treated at Uppsala University Hospital were invited (n = 109). Response rate was 79% (n = 86). Mean follow-up time was 35 years. Norm data matched for age and gender were used for comparison (n = 1385). Main Outcome Measures Health-related quality of life measured with the SF-36 questionnaire. High values indicate good level of health-related quality of life. Results The total patient group had lower values in the Mental Health subscale compared with norm data (p = .005). Values in all other subscales did not differ from norm data. Women had a higher positive difference than men in the subscale emotional role function compared with the matched norm population (p < .001). The younger age group (20 to 32 years old) consistently had a larger negative difference to matched norm data compared with the older age group (33 to 47 years old) in the subscales social function (p = .009), physical role function (p < .001), and emotional role function (p < .001). Conclusions Unilateral cleft lip and palate affected health-related quality of life differently depending on gender and age of the patient. Younger patients were affected more negatively than older patients on several subscales. However, except for the mental health subscale, health-related quality of life was similar among unilateral cleft lip and palate patients and norm data.

Effects of group motor skill intervention on five- to six-year-old children with developmental coordination disorder

The purpose of this study was to determine whether group motor skill intervention is an effective form of treatment when added to consultative services in 5− to 6-year-old children with developmental coordination disorder (DCD). An experimental group of DCD children (n = 17) was compared with a DCD control group without intervention (n = 20). The intervention was conducted once a week for 10 weeks. No significant differences between the groups in either Movement ABC motor test or the Movement ABC checklist were found before or after this intervention. When subgroups with different categories of motor difficulties were compared, significantly more children with borderline motor difficulties in the experimental group than in the control group had changed (improved) their category after intervention. It is concluded that children with definite motor difficulties do not benefit from this type of intervention. Future research should include comparison of well-defined subgroups of children with DCD.