Quantitative assessment of appearance changes and related distress in cancer patients.

OBJECTIVES: This study examined both the frequency of appearance-related symptoms and distress resulting from these symptoms in cancer patients receiving chemotherapy. METHODS: Self-report questionnaires were distributed to 753 outpatients receiving ≧ 4 weeks of treatment at an outpatient chemotherapy center. Valid responses were returned by 638 patients (response rate, 84.7%). Participants were questioned about 57 appearance-related symptoms (AS) and 23 non-appearance-related physical symptoms (non-AS); psychological well-being was assessed using a shortened version of the Derriford Appearance Scale 59. RESULTS: Questionnaire responses were obtained from 264 male and 374 female patients (mean age, 59.5 years; range, 18-85 years). Most respondents (80.3%) were concerned with changes in appearance resulting from treatment. By sex and disease type, women suffered more than men, and treatment for breast cancer created the greatest distress for women. CONCLUSION: Cancer patients are concerned about a variety of AS, and these may result in greater distress than non-AS. AS-related information and care are increasingly being sought in advance of treatment.

Feasibility and usefulness of the 'Distress Screening Program in Ambulatory Care' in clinical oncology practice.

OBJECTIVE: Although the implementation of routine screening for distress is desirable, doing so is difficult in today's busy clinical oncology practice. We developed the 'Distress Screening Program in Ambulatory Care' (DISPAC program) as a practical means of screening for and facilitating the treatment of major depression and adjustment disorders in cancer patients. This study assessed the feasibility and usefulness of the DISPAC program in actual clinical situations. METHODS: As part of the DISPAC program, nurses administered a psychological screening measure, the Distress and Impact Thermometer (DIT), to consecutive cancer patients visiting an outpatient clinic in the waiting room. The attending physician then recommended psycho-oncology service referral to all positively screened patients. We compared the proportion of patients referred to a psycho-oncology service during the DISPAC period with the usual care period. RESULTS: Of the targeted 491 patients treated during the DISPAC period, 91.9% (451/491) completed the DIT; the results were positive in 37.0% (167/451), recommendations for referrals were given to 93.4% (156/167), and 25.0% (39/156) accepted the referral. Ultimately 5.3% (26/491) of the targeted patients were treated by psycho-oncology service as having major depression or adjustment disorders, a significantly higher proportion than during the usual care period (0.3%; p<0.001). The nurses required 132+/-58 s per person to administer the DIT. CONCLUSIONS: The DISPAC program is useful for facilitating the care of cancer patients with psychological distress. Nevertheless, the acceptance of referrals by patients and the reduction of the burden placed on nurses are areas requiring improvement.

Outpatient clinic for genetic counseling and gene testing of retinoblastoma.

We report on the genetic counseling and gene testing of patients with retinoblastoma who visited the National Cancer Center Hospital, Tokyo, from April 1997 through September 2003. During this period, 73 probands visited the clinic, and gene testing was performed in 51 individuals. Germline mutations of the RBI gene were detected in 20 individuals (39%); the frequencies were 82% (9/11) in bilateral/familial retinoblastoma, 50% (2/4) in unilateral/familial retinoblastoma, 50% (8/16) in bilateral/nonfamilial retinoblastoma, and 5% (1/20) in unilateral/nonfamilial retinoblastoma. Gene testing is indicated in the medical practice of hereditary retinoblastoma for familial risk assessment, while prior counseling is important for an understanding of the risks and benefits of gene testing. With improvements in patient prognosis, counseling for adult survivors is increasing in importance. Assessment of genetic risk to the offspring and prevention of secondary cancer are the primary issues of concern. Presymptomatic diagnosis of infants is effective for the proper assessment of the genetic risk and for making follow-up schedules for the detection of the tumor at an early stage.