Genetic testing in familial melanoma: uptake and implications.

OBJECTIVE: We report on the uptake and psychological impact of p16-Leiden genetic testing to contribute to a greater understanding of counseling melanoma families. METHODS: Within a defined research setting, genetic counseling and testing were offered to members of p16-Leiden-positive melanoma pedigrees, at risk of carrying a gene defect associated with an increased risk of melanoma and pancreatic cancer. RESULTS: One hundred and eighty-four individuals sought counseling, of which 141 (77%) opted for genetic testing. Uptake of genetic counseling and testing, and psychological motivation was evaluated in 94 (57%) individuals. Higher pre-test risk of carrying the mutation and older age proved significantly predictive for counseling uptake. Age was predictive for test acceptance, whereas fearful test expectancies predicted test decline. Counselees had lower distress levels than those reported in other oncogenetic testing settings. CONCLUSION: We are the first to report on genetic testing for familial melanoma. Following the first counseling session, we found a relatively high uptake rate for p16-Leiden testing and no clinically worrisome levels of distress.

Stability of pain parameters and pain-related quality of life in adolescents with persistent pain: a three-year follow-up.

OBJECTIVE: Many juveniles with chronic pain of no known organic cause recover. Because adolescents whose pain persists may have chronic pain as adults, a subsample of 42 adolescents from a prevalence study in which continuation of their pain was observed throughout the study period was investigated quantitatively and qualitatively. All mothers (n = 42) completed a questionnaire on the impact of the adolescent's pain on the family. The authors tested the hypothesis that pain parameters, pain-related quality of life, and impact of pain on the family would deteriorate over time. DESIGN: Three-year follow-up questionnaires, diaries, and interviews were used. SETTING: The study was conducted in the general population in the Rotterdam area. PARTICIPANTS: Adolescents (aged 12-18 years) who indicated chronic pain in our previous prevalence study and in a diary and questionnaire each year of the 3-year follow-up were included in the study. RESULTS: The most prevalent pains were limb pain and headache. The pain intensity was mild (33 mm on a visual analog scale), very frequent (72% of all diary entries), and associated with relatively poor functional status and poor psychological and somatic functioning. The pain parameters, pain-related quality of life, and impact of pain on the family (i.e., restrictions in social life and problems in dealing with the stress of the adolescent's pain) remained surprisingly stable across the assessments. The interviews showed that pain had become part of the daily life of several adolescents, who structured their activities and sleeping hours to prevent aggravation of pain. In particular, adolescents with headache reported problems with cognitive activities, whereas those with limb pain and back pain reported problems with physical activities. CONCLUSIONS: For adolescents with persistent pain with no known organic cause, intensity and frequency of pain, quality of life, and impact of pain on the family did not change. Generally, they seemed to cope quite well with their pain. In view of these results, further studies should involve follow-up of adolescents with persistent pain into adulthood to establish the determinants of their pain and to find out whether they maintain their adaptive ways of living with their pain.