Phase III study of the European Organisation for Research and Treatment of Cancer satisfaction with cancer care core questionnaire (EORTC PATSAT-C33) and specific complementary outpatient module (EORTC OUT-PATSAT7).

Advances in cancer care delivery require revision and further development of questionnaires assessing patients' perceived quality of care. This study pre-tested the revised EORTC satisfaction with cancer care core questionnaire applicable in both the cancer inpatient and outpatient settings, and its new, outpatient-specific complementary module. The process of revision, development of the extended application, and pre-testing of these questionnaires was based on phases I to III of the "EORTC Quality of Life Group Module Development Guidelines." In phase III, patients in 11 countries in four European regions, South America and Asia completed provisional versions of the questionnaires. Fifty-seven relevant issues selected from literature reviews and input from experts were operationalized into provisional items, and subsequently translated into ten languages. Assessment of understanding, acceptability, redundancy and relevance by patients (n = 151) from oncology inpatient wards, and outpatient chemotherapy, radiotherapy and consultation settings, led to retention of, deletion of and merging of 40, 14 and 6 items respectively. Cronbach's alpha coefficients for hypothesized questionnaire scales were above 0.80. Our results provide preliminary support for the 33-item EORTC Satisfaction with cancer care core questionnaire and the 7-item complementary module specific for the outpatient care setting. A large scale phase IV cross-cultural psychometric study is now underway.

Frequency and severity of skin reactions in patients with breast cancer undergoing adjuvant radiotherapy, the usefulness of two assessment instruments - a pilot study.

Acute radiation skin reactions (ARSR) are a major problem in curative radiotherapy (RT). A number of studies have failed to show a positive effect of different skin care products to reduce or prevent ARSR. The aims for this study were to describe frequency and severity of ARSR in patients with breast cancer undergoing adjuvant RT and to test the suitability in clinical use of two assessment instruments. A majority (93%) of the 93 patients with breast cancer included in this study developed ARSR, most of them mild reactions. Low scores for pain and itching (VAS) were reported. ARSR were assessed using the modified version of RTOG/EORTC acute radiation morbidity scoring criteria and the World Health Organisation (WHO) grading system for acute and subacute toxicity by two independent observers after the completion of RT. The percentages of discordant assessment between the two observers were 21% for the WHO scale and 32% for the RTOG/EORTC. Severe ARSR, classified as grades 2-4 on both instruments resulted in good agreement between the two instruments. However, the assessments using RTOG/EORTC resulted in an almost 10% higher proportion of severe ARSR. Comparisons of health related quality of life and sleep revealed no statistically significant differences between patients with mild or severe ARSR assessed by the RTOG/EORTC scale with the exception of cognitive functioning. The use of assessment instruments to describe treatment-related symptoms is complicated and clinical experience is not always enough. More research is needed to validate these instruments to guarantee sound and precise assessments.

Using undergraduate nursing students as mediators in a knowledge transfer programme for care for patients with advanced cancer.

Nursing today faces numerous challenges. Societal changes lead to reorganization of health care, changing workloads with sicker patients in hospital and home care, and limited economic resources. The increasing and changing nature of knowledge needed for expert care provision challenges nurses to continually update their competencies. These are issues demanding proactive and dynamic changes in the way nurses conceive their mandates and practice. The aim of the action-research project presented here was to foster improved quality of care for patients with advanced cancer through collaborative endeavours integrating cancer nursing clinical practice, research and education in a knowledge exchange programme. The programme was based on input about caregiving needs from multi-professional staff caring for patients with advanced cancer in a variety of healthcare settings. Undergraduate baccalaureate nursing students were then engaged in literature studies to help address these needs. Results of the studies were communicated back to the involved clinicians in a variety of ways. In this paper, we discuss what we have experienced as opportunities and obstacles in conducting the project, based on our reflections and external evaluations. This is linked to a broader discussion of ways of integrating cancer nursing research, education and practice.

Life, illness and death--existential reflections of a Swedish sample of patients who have undergone curative treatment for breast or prostatic cancer.

The aim of this study is to describe cancer patients' existential reflections and how these reflections were met by the nursing staff. A qualitative method of data collection was used. Ten patients with breast- or prostate cancer who had completed curative treatment were interviewed. The results showed that the cancer diagnosis resulted in existential reflections in some of the patients. These reflections concerned the meaning of life, God/a higher power, health, work, relations and sexuality. Reflections on the cancer consisted in beliefs about the causes of cancer, treatment and cancer and sexuality. It could also be seen that loss of important life values, such as health and sexuality could lead to loss of meaning of life. Explicit reflections on sexuality were only made by two of the men in the study. The patients reported a need of existential support as well as obstacles for giving such support. Obstacles could be lack of time and lack of continuity, as well as lack of knowledge resulting in an inability to identify existential issues. Some of the patients had wanted existential support from nurses, while others received the support they needed from family and friends.

Detection of nodular and superficial spreading melanoma with tumour thickness < or = 2.0 mm--an interview study.

Differences regarding signs and symptoms between nodular melanoma (NM) and superficial spreading melanoma (SSM) with a tumour thickness < or = 2.00 mm were studied. Reasons for seeking medical attention were also investigated. Semi-structured interviews were conducted with 22 patients with NM diagnosed between 1994 and 1999 and 32 patients with SSM, matched to the NM patients with respect to age at diagnosis, gender and tumour thickness. NM were smaller in diameter, and 5 of 6 patients reporting a diameter <5 mm had NM. NM were more often new lesions than SSM, which more often had developed from pre-existing naevi. In most cases (61%), the melanoma was first detected by the patient and in 17% it was detected by the patient in combination with a family member. The most important reasons to seek medical attention were a change in the lesion or a symptom (65%), followed by encouragement from others to seek medical attention. Twenty-four patients (44%) had no symptoms of melanoma prior to diagnosis. Our results have important implications for prevention. It should be emphasized in public education that melanomas may have a diameter <6 mm and that family members have an important role in detection of melanoma and in motivating medical advice.

Sunbathing and sun-protection behaviors and attitudes of young Swedish adults with hereditary risk for malignant melanoma.

The aim of the study was to describe attitudes toward sunbathing and sun protection, to examine sun-related behaviors, and to present an effort to change sun-related behaviors among young adults without a cancer diagnosis in melanoma-prone families. Ten patients were interviewed, and questionnaires were sent on 3 occasions during a 15-month period to the total population (n = 87) meeting the inclusion criteria. Data from interviews and questionnaires showed extensive ultraviolet-exposure behaviors in this high-risk group for melanoma, although not always expressed in terms of sunbathing. When asked about sunbathing, 1/3 reported sunbathing "Often" or "Very often," despite a decrease in sunbathing during the study period. In addition, 35% reported current sun bed use. The most important reason for sunbathing was attractiveness. The risk of getting skin cancer was the most important reason to refrain from sunbathing. The majority estimated their own risk for melanoma as equal or lower compared with the general population. The planned intervention failed due to low attendance. Ultraviolet exposure is extensive. The individual perception of personal risk and the motivation to change behaviors are important factors to consider when designing a preventive program. Interest for group information was low in this age group.

Nodular histogenetic type -- the most significant factor for thick melanoma: implications for prevention.

Tumour thickness is the most important prognostic factor in malignant melanoma. To reduce the melanoma-related mortality, factors related to the presentation of thick melanoma have to be identified. Three samples of melanoma patients (n=694) were studied for this purpose. Histogenetic type was the only factor which differentiated between 'thin' (< or = 0.8 mm) and 'thick' (> 2.0 mm) lesions. During a 10-year period only 3% of the nodular lesions were 'thin' at diagnosis. Differences in knowledge about melanoma or the location of the lesion (either 'easy' or 'difficult' for the patient to observe) did not explain differences in tumour thickness. The most common tumour site irrespective of histogenetic type and gender was 'back of the trunk'. 'Increase in diameter' and 'bleeding' were the symptoms most frequently reported by patients with 'thick' melanoma. 'Thick' lesions were diagnosed in older age groups and in men to a greater extent. Considering these results, melanoma prevention should also be targeted to older age groups and attention should be paid to symptoms such as 'increase in diameter' even in the absence of other characteristic symptoms of melanoma. An increased proportion of nodular melanoma diagnosed as 'thin' lesions can be interpreted as a step forward in secondary prevention.

Factors related to non-attendance in a population based melanoma screening program.

A total of 127 non-attenders in a population-based melanoma screening program, 58 women and 69 men, were asked in a telephone interview about reasons for non-attendance. Of those, 105 also completed a mailed questionnaire, measuring perceived susceptibility to and knowledge about melanoma. During the same period, attenders (n = 286) at the screening clinic completed the same questionnaire. The most commonly reported reasons for non-attendance were 'I forgot about it', 'lack of time' and 'no need for examination'. A majority of non-attenders held a positive attitude towards preventive programs in general and to the present invitation. Most of the improvements suggested by the non-attenders were strategies to reduce practical barriers. Non-attenders scored lower than attenders on perceived susceptibility. High and equal levels of knowledge about melanoma were found among attenders and non-attenders. Men were more likely to be non-attenders. Higher perceived susceptibility and a higher level of knowledge about melanoma were found among women as compared to men. The results suggests that there is potential to increase attendance in future melanoma programs by reducing practical barriers.

Six-month follow-up of effects of an information programme for patients with malignant melanoma.

Using a randomized design, the effects of an information programme for melanoma patients were studied. The programme consisted of a group meeting and a brochure. The present study reports on the six-month follow-up of the effects of the programme. A total of 128 patients participated in the programme, 55 before and 73 after the first medical control visit. Questionnaires regarding knowledge about melanoma, psychological and psychosomatic variables were completed at the first medical control visit and six months later by mail. A questionnaire concerning patients attitudes to the programme was included after six months. Knowledge about melanoma increased and a majority of patients were satisfied with the information brochure, the group meeting and the group leader, but 40% considered that too few participants attended in their group meeting. No effects on psychological or psychosomatic variables were found. Men and women participated to the same extent.

Prevalence of primary acquired melanosis and nevi of the conjunctiva and uvea in the dysplastic nevus syndrome. A case-control study.

PURPOSE: To investigate whether conjunctival and uveal nevi and primary acquired melanosis are more common in individuals with the dysplastic nevus syndrome than in control subjects derived from the general population. METHODS: Power calculations were used to determine the sample size. After invitation, 162 individuals with the dysplastic nevus syndrome and 119 control subjects, matched for sex and age but otherwise randomized from the Stockholm county census file, were entered into the study. All individuals were examined in a masked fashion by the same ophthalmologist, and the presence of conjunctival and uveal melanocytic lesions and the iris color, skin type, and hair color of each individual were recorded. Contingency tables and odds ratios were used for statistical evaluation. RESULTS: The proportions of individuals with the dysplastic nevus syndrome featuring primary acquired melanosis of the conjunctiva, or nevi of the iris and choroid were not significantly different from those of control subjects. However, individuals with the dysplastic nevus syndrome appeared to have a more sun-sensitive skin type and a reddish or blond hair color more often than control subjects. CONCLUSION: In contrast to previous reports, this study suggests that ocular melanocytic lesions are no more common in individuals with the dysplastic nevus syndrome than in the general population. Therefore, this work does not provide support that periodic ophthalmic surveillance of individuals with the dysplastic nevus syndrome for the purpose of detecting conjunctival or uveal melanomas, or their precursors, is meaningful.

Information to patients with malignant melanoma: a randomized group study.

An information programme for patients with cutaneous malignant melanoma, Stage 1, aiming at increasing satisfaction with information, was carried out at the Department of Oncology (Radiumhemmet). The programme consisted of a group meeting and a brochure. A total of 231 consecutive patients were included, and 149 (65%) reported interest in participation and were randomized to the Information group (n = 77) or to the Control group. A total of 67 patients (29%) were not interested (the NI-group). To evaluate the programme, the patients in the three groups completed questionnaires regarding satisfaction with information, knowledge of melanoma and psychological and psychosomatic variables before randomization and at the first visit for follow-up at Radiumhemmet. After the information programme, the Information group was significantly more satisfied with information, had a higher level of knowledge and a lower proportion requested further information as compared with the Control group. No differences were found on the psychological and psychosomatic variables.

Psychological effects of participation in a prevention programme for individuals with increased risk for malignant melanoma.

The Swedish Melanoma Study Group runs a programme aimed at prevention and early detection of premalignant and malignant melanoma in families with two or more members having malignant melanoma. Psychological consequences of participation in this programme were studied. A questionnaire containing items concerning cognitive and emotional responses to the programme was completed by 115 consecutive individuals at their first visit to the clinic. The same questionnaire was administered by mail 7 months later. The levels of psychological and psychosomatic problems were relatively low at both points of assessment. No negative psychological effects were found, neither in the group with dysplastic naevus syndrome (DNS) with increased risk for malignant melanoma, nor in the group without dysplastic naevi. Only one variable, "emotional responses to the visit" differentiated between the groups, with higher scores in the group without DNS. A majority of the individuals expressed positive attitudes to the clinic.