Impairment of health-related quality of life in patients with inflammatory bowel disease: a Spanish multicenter study.

BACKGROUND: Inflammatory bowel disease impairs patients' perception of health and has a negative impact on health-related quality of life (HRQOL). Most studies include patients from a single hospital. This may bias limit results through the use of small patient samples and/or samples within a restricted disease spectrum. METHODS: HRQOL was measured in patients with ulcerative colitis (UC) and Crohn's disease (CD) from 9 hospitals located in different geographical areas in Spain using 2 questionnaires: the Spanish version of the Inflammatory Bowel Disease Questionnaire (IBDQ) and the EuroQol. Results are expressed as medians. RESULTS: The study included 1156 patients (528 patients with UC and 628 with CD; median age, 35 yr; slight predominance of women, 617 versus 539). HRQOL worsened in parallel with disease severity to a similar extent in both UC (IBDQ scores of 6.1, 4.7, and 4.0 for the 3 disease severity groups, respectively) and CD (IBDQ scores of 6.1, 5.0, and 4.1, respectively). A similar inverse relation between clinical activity and quality of life was observed when EuroQol preference values were used. All 5 dimensions of the IBDQ showed significantly lower scores in patients with active UC and CD than in patients in remission. The pattern of scores by IBDQ dimensions differed between patients in relapse (who scored worse on the digestive symptoms dimension) and patients in remission. Variables related with disease activity, time of evolution since diagnosis and female sex, were significantly associated with having a worse perception of HRQOL. The type of disease or geographical area of residence did not influence results on the IBDQ. CONCLUSIONS: UC and CD impair patients' HRQOL, and the degree of impairment depends on disease activity but is independent of the type of disease and place of residence.

Bioethics committees--a health communication approach.

The modern health care system is being transformed as a consequence of scarce resources and better informed consumers. In this transformed health care system human communication has become a crucially important process. This essay examines the health communication functions performed by bioethics committees in health care delivery and makes recommendations for promoting the effective use of these groups within the modern health care system. The essay describes how bioethics committee can help establish a climate in which physicians and other committee members can share relevant health information, learn about patient and family concerns, promote health education and informed consent, and facilitate effective decision making about complex health care practice issues. It is argued that clear recognition and attention to the central role of effective communication within the bioethics committee is essential for the survival of the modern health care system since ethics committees depend on sharing relevant information to diagnose health problems, provide health care, promote health education, help in the formulation of new health care policies, and provide much-needed decision-making support to health care providers and consumers. The role that health communication expertise can perform in the effective operation and utilization of bioethics committees is described. We conclude that in order to provide needed support in addressing the many complexities of modern health care, bioethics committees must develop clear communication processes, norms, and roles.

Adoption of a pharmacist conscience clause by Professional Associations and Boards of Pharmacy in the United States.

OBJECTIVE: To determine the number of professional associations and boards of pharmacy in the United States that have adopted or are considering to adopt a conscience clause as part of their codes of ethics, rules, laws or regulations. BACKGROUND: Pharmacists are often exposed to ethical dilemmas in their day-to-day practice and their response depends on a number of factors, including the personal beliefs and values of those involved. This has lead some professional associations to address whether their members have the right to refuse to participate in procedures which are contrary to their conscience or moral convictions. The outcome of these discussions is usually the development and adoption of a conscience clause. METHODS: A one-page self-administered questionnaire was sent by Fax to the highest ranking officer of 108 pharmacy organizations in the United States. RESULTS: Thirty-five completed questionnaires were received for a 32.4% response rate. In general, it was found that there is a lack of knowledge as to what a conscience clause is. Only two state associations and one board of pharmacy responded that they have a conscience clause as part of their code of ethics or regulations. Reasons given for not having a conscience clause included lack of interest and low priority. Nevertheless, four state associations, one national association and one board of pharmacy responded that they are considering developing a pharmacist conscience clause. More professional associations than boards of pharmacy expressed interest to obtain information about conscience clauses. CONCLUSION: Although many state associations and boards of pharmacy that responded do not have a conscience clause as part of their codes of ethics, laws or regulations, this survey shows an increasing interest to learn about it. This is expected as the pharmacist assumes increasing responsibility in patient care.