Hemophilia, Hemophiliacs and the Health Care Delivery System

National Heart and Lung Institute, Division of Blood Diseases and Resources, Office of Prevention, Control and Education

Caroline Roth Petit, Sc. M., Harvey G. Klein, M.D.

Table Of Contents

Preface

PART I - SOCIAL PROBLEMS
SOCIAL INDICATORS: Financial Disability; Education; Discrimination; Marital Stress; Passive Dependency

PART II - HEALTH PROBLEMS
VITAL INDICATORS: Morbidity; Mortality; Fertility; Heredity; Disability. DIMENSIONS: Incidence; Prevalence; Distribution; Duration.

PART III - BEHAVIOR INDICATORS
BEHAVIOURAL INDICATORS: Utilization; Preventative Actions; Consumption Patterns; Compliance. DIMENSIONS: Earliness; Frequency; Quality; Range; Persistence.

PART IV - PREDISPOSING FACTORS
THE FAMILY AND HEMOPHILIA: Mothers; Fathers; Siblings; Hemophiliacs; Hemophilic Girls.

PART V - ENABLING FACTORS - AVAILABILITY OF RESOURCES
HEMOPHILIA CENTERS AND OTHER SPCIALIZED INSTITUTIONS: Comprehensive Care; How a Center is Initiated; Minimum Population Required; The Pennsylvania Program. THE COST OF CARE: Third Party Payers; The Rochester Approach; The Payment Problem and Its Effect on Hemophilia Treatment; The State Response to the Cost of Care; The Federal Response - Categorical Approach; The Federal Response - National Health Insurance. BLOOD SUPPLY SYSTEM: National Blood Policy and the ABC; Regional Blood Centers; Plasma and Plasma Products; RESEARCH; NATIONAL HEMOPHILIA FOUNDATION

PART VI - REINFORCING FACTORS
PHYSICIANS: Physician Training; Physician Attitudes and Hemophilia. HEMOPHILIA CENTER PERSONNEL: Hematologists; Orthopedists; Nurses; Phsiotherapists; Dentists; Social Workers, Psychiatrists; Vocational Counsellors; Genetic Counselling.

LIST OF REFERENCES

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