National Swedish quality register for transgender health

Transgender healthcare in Sweden is publicly funded and paid for over the tax bill. It is provided on the same basis as any other necessary healthcare. It is organized in six regional gender teams. Alingsas-Goteborg,... [ view full abstract ]

Transgender healthcare in Sweden is publicly funded and paid for over the tax bill. It is provided on the same basis as any other necessary healthcare. It is organized in six regional gender teams. Alingsas-Goteborg, Linkoping, Lund-Malmo, Stockholm, Umea and Uppsala.
In 2010, Sweden’s National Board of Health and Welfare presented a report describing a transgender healthcare with great disparities, a general lack of resources and a lack of clinical training; therefore, National Guidelines were developed in order to improve it. These were based on existing best practice as well as the WPATH Standards of Care v.7, and adopted in April 2015.
Sweden has a long tradition of Quality Registers in healthcare. From the first ones in 1970’s they have grown to about a hundred certified and acknowledged National Quality Registries. They are developed by clinicians and other professionals in the respective clinical field in collaboration with patient groups.
Sweden also has a number of registers containing social, public health and demographic data. The article of Dhejne et al. (2011) about high rates of mortality among patients undergoing GRS is an example of how registers research can generate new knowledge in this field.

The presentation will describe a National Quality Register for Transgender Healthcare starting up in 2017. The aims of the transgender quality register is to promote equality and pave the way for a qualitative future care as... [ view full abstract ]

The presentation will describe a National Quality Register for Transgender Healthcare starting up in 2017. The aims of the transgender quality register is to promote equality and pave the way for a qualitative future care as well as a high level of safety. By following a wide number of indicators describing the health, wellbeing and general satisfaction of the patients, as well as collecting data on procedures and outcomes, the Register will form a rich knowledgebase for learning improvement and further research.

In 2013 Lennart Fallberg, the director of the Alingsas team, initiated the development of an interdisciplinary National Quality Register. Clinicians from all over Sweden formed a Steering Committee. The patient perspective was... [ view full abstract ]

In 2013 Lennart Fallberg, the director of the Alingsas team, initiated the development of an interdisciplinary National Quality Register. Clinicians from all over Sweden formed a Steering Committee. The patient perspective was brought in by a representative from RFSL, the National Federation for LGBTQ Rights. The Committee has been meeting quarterly and developed questionnaires and infrastructure for data collection together with the Registry Centre South. Funds has been granted from SALAR, Swedish Association of Local Authorities and Regions.
The Register follows the clinical trajectory of each individual from the first appointment and assessment, through the different interventions. Quality of Life and gender congruence, as well as morbidity and somatic risk factors will be followed long term.
As the Swedish system is built on publicly funded care operated by the regional government, it is possible to reach a large number of present and former patients. Patients receive a standardized information before giving consent to take part. The participation is completely voluntary; the patient may withdraw, and the specific data erased from the Register, at any given time upon the patient’s request. The personal integrity is safeguarded through compliance with regulations, which ensures special routines for information security and disclosure of data.

The Quality Register is made up of designed questionnaires for each discipline, as well as validated questionnaires for health related Quality of Life (RAND-36 the Swedish version of SF-36), over all Life satisfaction (LISAT)... [ view full abstract ]

The Quality Register is made up of designed questionnaires for each discipline, as well as validated questionnaires for health related Quality of Life (RAND-36 the Swedish version of SF-36), over all Life satisfaction (LISAT) and gender incongruence (TCS). The designed questionnaires are going to be administered by the professionals in connection with patient appointments. The patient reported outcome measures (PROM) will be administered over a web-link directly by the patient. Patients will also be asked to fill in a short form about their experience of the actual care at some appointments (PREM).

With about a 1000 new referrals in 2016, it’s reasonable to believe that, with a good coverage, the Quality Register will render a powerful set of data. The results can encourage both learning improvement and further... [ view full abstract ]

With about a 1000 new referrals in 2016, it’s reasonable to believe that, with a good coverage, the Quality Register will render a powerful set of data. The results can encourage both learning improvement and further research. In order to achieve this, data needs to be attainable for local clinical management as well as on an aggregated level for producing knowledge about care and outcome. The registering teams and clinics manage their own data. The Steering Committee can retrieve data from the entire register in order to present annual reports. Data may be used for research after approval by the Steering Committee.
With a vast number of measures many questions may be addressed. Information about the structure and processes of care gives an overview of equality and access, and can guide resource management and local guidelines. Psychosocial topics and PREM will give a description of different needs over time. PROM and vital medical follow-up data will address questions regarding complications, disparities in outcomes or side-effects and comorbidity.

In 2017 the six gender teams in Sweden will begin to record data in a National Quality Register. Patient reported outcome and experience measures, structural and process measures as well as descriptive data of the patient... [ view full abstract ]

In 2017 the six gender teams in Sweden will begin to record data in a National Quality Register. Patient reported outcome and experience measures, structural and process measures as well as descriptive data of the patient group are going to be collected long term. All together it will form a rich knowledgebase for a healthcare that meets the needs of patients, that promote equality and that is better adjusted to changes in the society.
Better knowledge about patient experiences, and how expectations are met, will make it easier to develop a qualitative transgender healthcare. The National Quality Register for Transgender Health will focus on a group of people who still have difficulties to obtain a good, equal and qualitative care, and whose voices plays a crucial role for understanding their needs. It will also highlight lack of research and evidence in transgender specific healthcare.