Mia Bergenmar

Cancer rehabilitation: A Nordic and European perspective.

Abstract Background. The increasing incidence of cancer combined with prolonged survival times seen throughout the western world increases the need for rehabilitation. Diagnosis and treatment for cancer may have substantial effects on the patients’ physical, psychological, social and existential well-being. The aim of this paper is to describe the current situation in cancer rehabilitation in the Nordic countries, the Netherlands and Germany. Material and methods. Description of the current situation in cancer rehabilitation in the Nordic countries and literature review. Results. Rehabilitation as defined by multiple organizations covers a multidimensional view on chronic disease and its effect on the patients life. The rehabilitation systems in Denmark, Finland, Sweden, Germany and the Netherlands differ depending on the differing social security and health-care systems, but rehabilitation provided is largely based on a similar, multidimensional and multidisciplinary understanding of cancer rehabilitation. Research on rehabilitation efforts in European countries indicates that there is substantial evidence with regard to single interventions which can be part of cancer rehabilitation. Discussion. In order to assure patients and families continuing quality of life, rehabilitation should be an integral and continuous part of all cancer care.

Knowledge and understanding among cancer patients consenting to participate in clinical trials.

The aim of this study was to explore the fulfilment of the requirements of informed consent in patients participating in cancer clinical trials. All patients consenting to a phase II or III clinical trial during one year were included (n=325, 176 women, 54%). Data were collected by a questionnaire, Quality of Informed Consent. The response rate was 87%. High levels of knowledge (>80%) were found for items concerning voluntariness, randomisation, benefits for future patients, participation in a research trial, and the right to withdraw. Less than 50% responded correctly to items about risks associated with the trial, the unproven nature of the trial and issues about insurances. High levels of perceived understanding were reported. Despite high levels of knowledge and perceived understanding in the majority of elements of informed consent, improvements are warranted regarding knowledge about risks, the unproven nature of the treatment and the duration of treatment.

Improvements in patient satisfaction at an outpatient clinic for patients with breast cancer

The present study prospectively investigated changes in patient satisfaction at an outpatient clinic for patients with breast cancer. Consecutive patients were asked to anonymously complete a questionnaire after their medical examination. The questionnaire consisted of 12 multiple-choice items concerning waiting time, interpersonal skills of physician and nurse, continuity of care, length of medical visit, communication and expectations. Finally, patients were asked for suggestions for improvements at the clinic in an open-ended question. The first measurement was conducted in 2000/2001 and the last in 2004, and between the two points of assessments efforts to develop care were introduced. Statistically significant improvements were found in eight of the 12 items: waiting time, length of medical visit, information, expectations and continuity of care. In conclusion, the questionnaire captured positive changes in patient satisfaction between the two measurements. Further changes for the better were still requested concerning continuity of care despite reported improvement.

Monitoring of Kindreds With Hereditary Predisposition for Cutaneous Melanoma and Dysplastic Nevus Syndrome: Results of a Swedish Preventive Program

PURPOSE To evaluate a program initiated in 1987 by the Swedish Melanoma Study Group aiming to provide preventive surveillance to kindreds with hereditary cutaneous melanoma and dysplastic nevus syndrome. PATIENTS AND METHODS Overall, 2,080 individuals belonging to 280 melanoma families were followed for 14 years between 1987 and 2001 at 12 participating centers. Data were registered in a central database. RESULTS Among 1,912 skin lesions excised during follow-up, 41 melanomas were removed in 32 individuals. Of these, 15 (37%) were in situ melanomas and 26 (63%) invasive melanomas. The median tumor thickness of invasive melanomas was 0.5 mm. Ulceration was absent in 24 of 26 invasive melanomas (92%) and 12 (46%) lacked vertical growth phase. Compared with melanomas in the general Swedish population, the melanomas identified in these kindreds during follow-up had better prognostic characteristics. All melanomas except one were diagnosed in families with two or more first-degree relatives with melanoma. Diagnosis of melanoma occurred in three of eight kindreds with germline CDKN2A mutations, supporting that families with such mutations are at increased risk for melanoma development. Of the 32 individuals who developed melanoma during follow-up, 21 (66%) had had at least one previously diagnosed melanoma. CONCLUSION This study shows that a coordinated program aimed at detecting and offering skin surveillance in kindreds with hereditary cutaneous melanoma results in a low incidence of melanomas during the follow-up period and that the tumors that do arise have favorable prognostic characteristics.

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.

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.

Levels of knowledge and perceived understanding among participants in cancer clinical trials – factors related to the informed consent procedure

Background An informed consent from patients participating in cancer clinical trials is mandatory according to international and national guidelines and laws. Insufficient knowledge and understanding by trial participants have been reported in several studies. Purpose The aims of this study were to investigate factors of importance for knowledge and understanding about cancer clinical trials among trial participants. Methods All patients consenting to a phase II or III clinical trial during 1 year were invited (n = 325). Data on knowledge and perceived understanding were collected by a questionnaire, Quality of Informed Consent. Results are based on data from 268 patients (82%). Associations between knowledge and perceived understanding as well as clinical, socio-economic factors, and factors related to the informed consent procedure were tested. Results In the multivariate analysis no statistically significant associations were found between knowledge and any of the factors. Patients who reported longer time for trial information before their decision to participate, those who found the decision easy to take, and patients who reported use of other information sources had statistically significant higher perceived understanding. No differences in mean scores for knowledge or perceived understanding were found for any of the clinical factors (age, gender, diagnostic group, trial phase), socio-economic factors (education, marital status), and the following factors related to the informed consent procedure; presence of relative or nurse at information about the trial or previous participation in clinical trials. Limitations No study specific questions were included due to the number of trials (n = 35). Conclusion Strategies to increase patients’ knowledge needs to be elaborated in order to improve the fulfilment of the requirements of informed consent in participants in cancer clinical trials.

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.

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.

Anxiety and Depressive Symptoms Measured by the Hospital Anxiety and Depression Scale as Predictors of Time to Recurrence in Localized Cutaneous Melanoma

The purpose of this study was to investigate anxiety and depression as predictors for recurrence-free survival in cutaneous melanoma, when corrected for known prognostic factors. The association between known prognostic factors and anxiety and depression were also studied. Consecutive patients (n = 437) completed the Hospital Anxiety and Depression Scale (HAD) approximately three months after diagnosis of melanoma. Neither anxiety, nor depression turned out to be prognostic factors for time to recurrence. A higher proportion of young patients, women, patients without ulcerated tumours, patients with tumours with low mitotic index and Clarks level II tumours scored ≥8 (possible clinical levels of anxiety) on the anxiety scale. Furthermore, on the depression scale, a higher proportion of young patients scored ≥8 (possible clinical level of depression). Using the HAD scale, a well-validated instrument for assessing anxiety and depression in patients with somatic diseases, our data did not show any associations between anxiety or depression and outcome in terms of recurrence in patients with localized disease.