Towards a decision aid for self‐tests: Users’ experiences in The Netherlands

BACKGROUND: Self‐tests enable the identification of (risk factors for) diseases and are carried out on the user's initiative without medical indication or advice and often unaided by a health professional. They are frequently used, and their availability and usage are expected to grow. Self‐testing has both advantages and disadvantages. Making a well‐informed decision about whether to self‐test and which self‐test to use is of major importance. OBJECTIVE: To provide insights into the experiences of self‐test users, identifying reasons to self‐test and perceived (dis)advantages of using self‐tests and the information highlighted as relevant by self‐test users to make well‐informed decisions. METHODS: In a qualitative study, 28 users of a wide variety of self‐tests shared their experiences in focus groups and interviews. RESULTS: Perceived disadvantages of self‐testing included the following: a wide range of available self‐tests, lack of insights into their reliability and content, possibility of mistakes in administering them, possibility of false‐positive and false‐negative results, lack of clarity about how to interpret results and consequently what action to take and fear of not being taken seriously by a general practitioner. Self‐test aspects that were viewed as most important include informed decision making, user‐friendliness, usefulness and reliability of results. CONCLUSION: A decision aid for future self‐test users can help people make a deliberate decision on whether to use a self‐test and which particular self‐test to use from the wide range available. The government, health professionals, patient organizations, consumer organizations and citizens all have a role to play in the development and implementation of a decision aid.