The EORTC ophthalmic oncology quality of life questionnaire module (EORTC QLQ-OPT30). Development and pre-testing (Phase I-III).

AIMS: The research objective was to develop a questionnaire module to be used, in addition to the European Organisation into Research and Treatment of Cancer (EORTC) QLQ-C30, for measurement of quality of life (QL) among patients with uveal melanoma treated with methods such as transpupillary thermotherapy, plaque radiotherapy, proton beam radiotherapy, local resection, and enucleation. The present paper describes the development through Phases I-III. METHODS: Relevant QL issues were generated from literature search and from interviews with ophthalmologists, nurses, and patients with uveal melanoma representing three major treatment options: enucleation, plaque brachytherapy, and proton beam therapy. RESULTS: The provisional module was pretested in 61 patients from Finland, Sweden, and UK. The EORTC QLQ-OPT30 module consists of 26 items for all patients, and four additional items for patients receiving treatments other than enucleation. It measures ocular irritation, vision impairment, headache, worry about recurrent disease, problems with driving, problems with appearance functional problems due to vision impairment, and problems reading. CONCLUSIONS: Several treatment modalities are available for uveal melanoma. There is limited knowledge of the impact of these treatments on QL in the long and short term. We hope that the OPT30 module together with the EORTC QLQ-C30 core questionnaire can be a useful tool in research.

A randomised population-based intervention to examine the effects of the ultraviolet index on tanning behaviour.

The aim of the following study was to examine the effects of the Ultraviolet (UV) Index and a personal ultraviolet radiation (UVR) intensity indicator on tanning behaviour compared with general, written information about sun protection. A population-based random sample in Sweden was randomly assigned to four groups receiving different information packages (n=3200). Questionnaires were sent before and after the summer of 2001. Positive attitudes towards sunbathing as well as tanning and sunburn frequencies decreased. Knowledge about UV radiation and the use of sun protection increased for all groups. There were no between-group differences. Sun-related behaviours and beliefs changed, but information about the UV Index or a personal UVR intensity indicator did not decrease sunbathing and sunburn more than general, written information.

Sunbathing and sunbed use related to self-image in a randomized sample of Swedish adolescents.

In 1996 a randomized sample of 4,020 Swedish adolescents from three birth cohorts were sent a questionnaire consisting of 50 items concerning habitual sun-related behaviours and attitudes, knowledge about melanoma, risk perception and self-image. A total of 2,615 questionnaires were returned. Girls sunbathed and used sunbeds more than boys at all ages. Sunbathing and sunbed use increased with age. Boys who were most satisfied and girls least satisfied with themselves sunbathed most. Those who were least satisfied with themselves used sunbeds most frequently. Girls reported a higher perceived susceptibility to melanoma than did boys. The perception of susceptibility increased with age. Those who were least satisfied with themselves reported feeling most susceptible. The overall main reason for sunbathing was appearance, both for own sunbathing, and to an even higher degree, as a supposed reason for other adolescents' behaviour, and was reported most frequently by girls and the older age groups. The second most 'important' reason for sunbathing was 'feeling warm and comfortable'. Preventive programmes aimed at a change of sun related behaviours among Swedish adolescents have to be tailored to the climate and cultural conditions and must take into account that having a tan, and the warmth of the sun, are highly valued by most adolescents.

Assessment of sun-related behaviour in individuals with dysplastic naevus syndrome: a comparison between diary recordings and questionnaire responses.

In Sweden, individuals with dysplastic naevus syndrome (DNS-D2), a high risk group for malignant melanoma, are regularly screened and informed about self-examination and sun protection. During the summer of 1994, 54 out of 65 consecutive patients completed 1 month of daily self-recordings of sun-related behaviour. The diary report was compared with questionnaire responses obtained 6 months later concerning sun-related behaviour, both habitual and during the month of self-recording. The correspondence between the sun-related behaviour recorded in the diary and given in response to the questionnaire was fairly high, but 48% underestimated and 29% overestimated their actual number of sunbathing occasions in the questionnaire. Few patients indicated habitual high frequencies of sunbathing, although some of them recorded six or more occasions during 1 month in the diary. Those who recorded multiple sunburns reported the highest number of sunburns in the questionnaire. Patients who scored high on sunbed use also recorded high numbers of sunbathing occasions. Diaries should be used when detailed information about the magnitude of sun-related behaviour is essential, whereas questionnaires should be sufficient in studies aiming to differentiate between high and low frequencies of such behaviour.

Sun-related behaviour in individuals with dysplastic naevus syndrome.

In Sweden, individuals with dysplastic naevus syndrome are regularly screened and informed about self-examination and sun-protection at special clinics. This study describes sun-related behaviour in this group. A total of 54/65 consecutive patients with dysplastic naevus syndrome (28 women and 26 men) completed diary recordings of sun-related behaviour during 1 month in 1994. A majority (81%) reported sunbathing with the intention to get a tan, mean number of occasions 9.2, range 1-24 occasions, during the month of recordings. Out of these, 61% reported sunburns, some of them repeatedly up to 7 times. Sunbathing occurred mainly in bathing suits during midday in sunny weather, with a mean duration of 2.5 h per occasion. Such a hazardous behaviour in the sun in a melanoma high risk group is alarming. New models for intervention to support a more sun protective life style in this group of patient have to be elaborated.