Resources for Patients and Families

The following are organizations that provide support and advocacy for patient with genetic conditions and their famihesi  

The following pubHcations offer detailed information for patients about the science of genetics  

19 Adapted from the National Library of Medicine http //ghr.nlm.nih.gov/ghr/resourc /patients. 

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The underlying aim of each mode of economic evaluation is to examine the efficiency with which resources are being utilized. If the evaluation is comparing two alternative treatments, the question to be addressed is whether one treatment achieves a better outcome for patients and families than the other treatment, relative to their respective costs. If the outcomes that follow from the two treatments are known or found to be identical, the economic question would be whether one treatment is less costly than the other. These are efficiency questions, and could be used to compare alternative accommodation settings, family support... 

Paul Batalden tell us, We should not work from an assumption of scarcity, but rather from an assumption of abundance (cited in Berwick, 2002a). Our sources of abundance include the wisdom, resilience, and capacities of patients and families the skill, compassion, and resourcefulness of the workforce and the knowledge the workforce possess about what is not working for patients and the barriers to providing the best possible care. As we look to patients, families, and the health care workforce, our opportunities to bridge and ultimately close the gaps in health care are abundant. 

Help patient families obtain adequate caregiver assistance. Assess their healthcare benefits and financial resources, if necessaiy. Identify all possible resources for help and arrange respite care services, or care facility placement, periodically, to help prevent caregiver burnout. 

Economic studies should consider the costs of all the resources and services used in the process of care. In addition, the outcomes that are a consequence of the health or social care interventions evaluated need to be included. For dementia, these include the costs of hospital inpatient and out-patient care, primary and community-based health-care services, social welfare services, and care provided by voluntary agencies or by femily and friends. Ideally, a broad perspective reflecting the costs and outcomes to society should be adopted. As a minimum, the perspective of the analysis should include the costs and outcomes to key health and social care providers or funders and to patients and their families. 

The recent emphasis on use of only family based association/linkage tests has ignored the readily available resource of case/control data (57), where sampling and then study of many thousands of samples are feasible with new techniques. Provided the patient and control groups are carefully matched for ethnicity, population stratification effects creating spurious associations are eliminated. The large collections of multiplex families now available for linkage studies in many complex diseases are obviously also a valuable resource for association screens (65,80). 

The therapist can help the family and caregivers find snch essential and concise how-to snrvival gnides as this special report (Kahn et ah, 1998) and many other resonrces available throngh the Internet. One very helpful website, www.alzheimers.org, is that of the ADEAR (Alzheimer s Disease Education and Referral) Center, a service of the National Institute on Aging of the National Institutes of Health in the U.S. Department of Health and Human Services. The website of the Alzheimer s Disease and Related Disorders Association, Inc., www.alz.org, also provides resources and information for patients, families, and caregivers. 

Direct nonmedical costs are any costs for nonmedical services that are results of illness or disease but do not involve purchasing medical services. These costs are consumed to purchase services other than medical care and include resources spent by patients for transportation to and from health care facihties, extra trips to the emergency department, child or family care expenses, special diets, and various other out-of-pocket expenses. 

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