Experiences of co-producing person-centred and cohesive clinical pathways in the national system for knowledge-based management in Swedish healthcare: a qualitative study.

BACKGROUND: When the 21 Swedish county councils decided to collaborate in the creation of a national system for knowledge-based management, patient participation was mandatory. Patient and next-of-kin representatives (PR) co-produced person-centred and cohesive clinical pathways together with healthcare professionals (HPR). Research on co-production in healthcare at the national level is scarce. The aim of this study is to explore experiences of patient participation from the perspectives of both PRs and HPRs when co-producing clinical pathways within the Swedish nationwide healthcare system for knowledge-based management. METHODS: A qualitative study was conducted. A strategic sample of nine PRs and eight HPRs were interviewed individually between August 2022 and January 2023 using a semi-structured interview guide. We analysed data using an inductive content analysis. RESULTS: Three main categories were identified: (1) Finding appropriate patient representativeness; (2) Working methods that facilitate a patient perspective; and (3) Influence of the patient perspective in the clinical pathways. CONCLUSIONS: The study demonstrates the importance of patient and next-of-kin participation in the construction of clinical pathways at the national level. The results provide a platform for further research on patient participation on the national level and add to studies on if and how patient participation on this level has an impact on how the clinical pathways are put into practice at the micro level, and the support provided at the meso level. The study contributes to the growing body of literature studying patient participation and co-production. TRIAL REGISTRATION: Region Örebro County ID 276,940. An advisory opinion was obtained from the Swedish Ethical Review Authority (2021-05899-01).

[Treatment of Graves' disease is moving towards precision medicine]. / Behandling av Graves sjukdom.

This is the first national guideline in hyperthyroidism to harmonise and update clinical practice according to what is evidence based and direct care from patients' needs. We present 4 articles in Läkartidningen of different views of the guideline, including family care perspectives, patient care perspectives and perspectives on ophthalmology. This article concerns treatment of Graves' disease and includes endocrinological, surgical and oncological perspectives on what is established practice, but also news in the national guideline that remain to be fully implemented in Sweden in the years to come. News are precision medicine using the GREAT score, preoperative calcium/D vitamin treatment, individualized levothyroxine treatment after thyroid surgery, uniformed levothyroxine replacement strategy, access to national patient information and national guidelines on radiation protection and treatment schemes for radioactive iodine. A national guideline is the creation of many persons' views, including patient representatives, and the recommendations have undergone a thorough national review process from stakeholders. It is a guideline with future perspectives for an improved care.

[Patient needs at the heart of the national hyperthyroidism guideline]. / Patientens behov i fokus i vårdprogram för hypertyreos.

Hyperthyroidism is a common disease that primarily affects women of all ages, and in addition to physical symptoms, mental symptoms are common, such as mental fatigue, anxiety, difficulty concentrating and mood changes. A common opinion is that the patient is recovered once the thyroid disorder is treated. However, many patients will experience persistent brain fatigue and mental problems, even after normal thyroid function is restored. Patients want to live as good a life as possible despite their illness, and in healthcare, they request interventions for rehabilitation. A new guideline for hyperthyroidism was launched in January 2023 that highlights many of these aspects, including the mental symptoms and the patient's perspective on hyperthyroidism. In this article, we want to address the patient's needs and how we can meet them in healthcare to increase their participation, confidence and quality of life, with continuity throughout the entire care process.

[Four perspectives on Graves' orbitopathy - from the point of view of the patient, general practitioner, endocrinologist, and ophthalmologist]. / Endokrin oftalmopati ur fyra olika perspektiv.

Graves' orbitopathy is a common complication of Graves' disease. The mild form dominates, whereas moderate to severe and sight threatening forms are rarer. They require quick, adequate care, involving cooperation between county hospitals and the regional hospital, and adequate diagnostics and choice of treatments of treatments. A new national guideline for hyperthyroidism has been published in Sweden in January 2023, where these aspects are highlighted. The present guideline requires implementation regionally, as all components are not in place, but reflects the needs of patients. This article highlights important aspects for patients such as information, to be listened to, accessibility and adequate care, but also defines actions necessary in primary care where patients most often seek help at first. Lastly, important medical and practical aspects are reviewed by the endocrinologist and the ophthalmologist.

Patient needs and care: moves toward person-centered care for Graves' disease in Sweden.

Patients with Graves' disease (GD) not only need appropriate medical care, but they also need to be cared for. The aim of this review is to examine the literature on GD patient needs, expectations, perceptions, and quality of life. We will also present methods for patient care, define gaps in knowledge, and suggest factors that can be introduced into the regular care of GD patients. Patient information, teamwork with thyroid/contact nurses, education of personnel and patients, quality of life measurements, and the formation of a rehabilitation program have enough evidence to be implemented into regular care. However, visualizing patient needs through person-centered care requires further evaluation in GD patients before being implemented in routine care. We conclude that considerable improvement in nursing can be achieved in relation to GD.