The effect of therapy refusal against medical advice in retinoblastoma patients in a setting where treatment delays are common.

BACKGROUND: Patients who refuse therapy against medical advice may be at risk of adverse health outcomes. We analyzed the impact of therapy refusal and its effect on the survival of retinoblastoma patients. PATIENTS AND METHODS: 165 consecutive untreated retinoblastoma patients admitted to the CM-Hospital, between 1993-2000 were evaluated retrospectively. Survival outcomes and its association with delays and tumor staging were analyzed using Kaplan-Meier and Cox-Regression. RESULTS: Of the 165 cases, 78 cases (47,3%) were assigned to the "No-Refusal-Group"; 52 cases (31,5%) to "Temporary-Refusal-Group," 30 cases (18,2%) to "Definite-Refusal-Group." Survival rates of patients who temporarily refused were significantly lower than those who did not refuse the therapy (p < 0.05). Progression of tumor stage was highly associated with temporary-refusal (p < 0.0005). In the Cox-Regression model, clinical staging of tumor was highly associated, whereas admission delay and treatment delay were slightly associated with the overall survival (p < 0.05, adjusted-hazard-ratio 6.321, 1.031,1.025, respectively). The clinical staging is the strongest variable associated with patient survival outcome. Delay >or= 6 months between first sign and admission is highly associated with tumor progression (p < 0.0005). CONCLUSIONS: First, the high level of therapy refusal in a developing country like Indonesia has an adverse effect on the survival outcome of retinoblastoma patients. Second, the change of the tumor stage from intraocular to extraocular is the most adverse predictive factor for survival. Third, the advanced stage of the tumor is caused by long delay to admission. In a developing country the parents of many young patients refuse to accept the recommended therapy and therefore the tumor may reach a critical stage for the prognosis.

Evaluation of cross-sectional and longitudinal construct validity of two vision-related quality of life questionnaires: the LVQOL and VCM1.

The Low Vision Quality of Life (LVQOL) questionnaire and the Vision-related Quality of Life Core Measure (VCM1) are two of the many vision-related quality of life (QOL) questionnaires that have been developed in recent years. Although psychometric properties of the LVQOL and VCM1 compare well with other vision-related QOL questionnaires, construct and longitudinal validity have not been assessed (adequately). The purpose of this study was to examine the cross-sectional and longitudinal construct validity of these questionnaires by testing specific pre-specified hypotheses about the relations of these questionnaires with other measures. The percentage of hypotheses regarding the cross-sectional construct validity that were refuted for the LVQOL was 22% for the basic aspects of vision subscale, 50% for the mobility subscale, 39% for the adjustment subscale and 17% for the reading and fine work subscale. For the VCM1 this percentage was 57%. For the longitudinal construct validity the percentage of hypotheses that were refuted ranged from 33 to 75% for the LVQOL subscales and was 50% for the VCM1. In conclusion, cross-sectional construct validity was satisfactory for the LVQOL subscales, but seemed poor for the VCM1. In addition, the longitudinal validity of these scales was poor to moderate.

[The practice guideline 'Refraction errors' from the Dutch College of General Practitioners: response from the perspective of ophthalmology]. / De standaard 'Refractieafwijkingen' van het Nederlands Huisartsen Genootschap; reactie vanuit de oogheelkunde.

The practice guideline 'Refraction errors' from the Dutch College of General Practitioners provides a guideline for referral of persons aged 6 to 65 with gradual loss of vision to either an optician or an ophthalmologist. In this guideline, relevant questions regarding important symptoms are missing, and the value of the proposed examination employing 'diagnostic refraction' has insufficient scientific support. In addition, the possibility to send children between 6 and 10 years of age to the optician may be dangerous for some of the patients, and there are no explicit indications for the urgency of referral to the ophthalmologist. Due to these short-comings, the guideline may fail to provide optimal preventive and therapeutic eye care for the target group of patients concerned.