Belonging, happiness, freedom and empowerment-a qualitative study of patients' understanding of health in early rheumatoid arthritis.

BACKGROUND: Rheumatoid arthritis (RA) is a chronic, systemic, inflammatory joint disease, that influences patients' health in different ways, including physical, social, emotional, and psychological aspects. The goal of rheumatology care is to achieve optimal health and personalised care and therefore, it is essential to understand what health means for patients in the early course of RA. The aim of this study was to describe the understanding of health among patients with early RA. METHODS: The study had a descriptive qualitative design with a phenomenographic approach. Phenomenography is used to analyse, describe, and understand various ways people understand or experience a phenomenon, in this study, patients' understandings of health. Individual semi-structured interviews were conducted with 31 patients (22 women and nine men, aged (38-80) with early RA, defined as a disease duration of < 1 year, and disease-modifying anti-rheumatic drugs (DMARDs) for 3-7 months. The phenomenographic analysis was conducted in 7 steps, and the outcome space presents the variation in understanding and the interrelation among categories. In accordance with the European Alliance of Associations for Rheumatology's (EULAR) recommendations, a patient research partner participated in all phases of the study. RESULTS: The analysis revealed four main descriptive categories: 'Health as belonging' was described as experiencing a sense of coherence. 'Health as happiness' was understood as feeling joy in everyday life. 'Health as freedom' was understood as feeling independent. 'Health as empowerment' was understood as feeling capable. Essential health aspects in early RA are comprised of a sense of coherence, joy, independence, and the capability to manage everyday life. CONCLUSIONS: This study revealed that patients' perception of health in early RA encompasses various facets, including a sense of belonging, happiness, freedom, and empowerment. It highlighted that health is multifaceted and personal, emphasizing the importance of acknowledging this diversity in providing person-centred care. The findings can guide healthcare professionals to deepen patients' participation in treatment goals, which may lead to better treatment adherence and health outcomes.

Acquisition of complement fixing antibodies targeting Plasmodium falciparum merozoites in infants and their mothers in Uganda.

Background: Antibody-mediated complement fixation has previously been associated with protection against malaria in naturally acquired immunity. However, the process of early-life development of complement-fixing antibodies in infants, both in comparison to their respective mothers and to other immune parameters, remains less clear. Results: We measured complement-fixing antibodies in newborns and their mothers in a malaria endemic area over 5 years follow-up and found that infants' complement-fixing antibody levels were highest at birth, decreased until six months, then increased progressively until they were similar to birth at five years. Infants with high levels at birth experienced a faster decay of complement-fixing antibodies but showed similar levels to the low response group of newborns thereafter. No difference was observed in antibody levels between infant cord blood and mothers at delivery. The same result was found when categorized into high and low response groups, indicating placental transfer of antibodies. Complement-fixing antibodies were positively correlated with total schizont-specific IgG and IgM levels in mothers and infants at several time points. At nine months, complement-fixing antibodies were negatively correlated with total B cell frequency and osteopontin concentrations in the infants, while positively correlated with atypical memory B cells and P. falciparum-positive atypical memory B cells. Conclusion: This study indicates that complement-fixing antibodies against P. falciparum merozoites are produced in the mothers and placentally-transferred, and they are acquired in infants over time during the first years of life. Understanding early life immune responses is crucial for developing a functional, long lasting malaria vaccine.

Patients' Perceptions of Person-Centered Care in Early Rheumatoid Arthritis: A Qualitative Study.

OBJECTIVE: Most research on patient experiences of rheumatoid arthritis (RA) care is performed with patients who have established RA and less often with patients with early RA. Experiences of and expectations about health care may change over time, which is why the aim was to explore patients' perceptions of person-centered care (PCC) early in the RA disease course. METHODS: Thirty-one patients with early RA were interviewed in this qualitative study. An abductive qualitative content analysis was conducted based on the framework of McCormack and McCance (1,2). The four constructs, prerequisites, care environment, person-centered processes, and person-centered outcomes, constituted the four categories in the deductive part of the study. An inductive analysis generated 11 subcategories exploring the content of PCC. RESULTS: For patients with early RA, PCC was described in terms of 1) prerequisites including being treated with respect, meeting dedicated health care professionals, and meeting professional competence; 2) care environment including having access to a multidisciplinary team, having access to health care, and encountering a supportive organization; 3) person-centered processes including being listened to, being supported, and being involved in decision-making; and 4) person-centered outcomes including being satisfied with received health care and achieving optimal health. CONCLUSION: Genuine PCC is important for patients early in the RA disease course, supporting the implementation of a person-centered approach during all stages in the health care system. This study contributes to information about how to further develop person-centeredness in rheumatology care.

What do patients prefer? A multinational, longitudinal, qualitative study on patient-preferred treatment outcomes in early rheumatoid arthritis.

OBJECTIVES: To explore treatment outcomes preferred by patients with early rheumatoid arthritis (RA) and how these change throughout the early disease stage across three European countries. METHODS: A longitudinal, qualitative, multicentre study was conducted in Belgium, the Netherlands and Sweden. 80 patients with early RA were individually interviewed 3-9 months after treatment initiation and 51 of them participated again in either a focus group or an individual interview 12-21 months after treatment initiation. Data were first analysed by country, following the Qualitative Analysis Guide of Leuven (QUAGOL). Thereafter, a meta-synthesis, inspired by the principles of meta-ethnography and the QUAGOL, was performed, involving the local research teams. RESULTS: The meta-synthesis revealed 11 subthemes from which four main themes were identified: disease control, physical performance, self-accomplishment and well-being. 'A normal life despite RA' was an overarching patient-preferred outcome across countries. Belgian, Dutch and Swedish patients showed many similarities in terms of which outcomes they preferred throughout the early stage of RA. Some outcome preferences (eg, relief of fatigue and no side effects) developed differently over time across countries. CONCLUSIONS: This study on patient-preferred outcomes in early RA revealed that patients essentially want to live a normal life despite RA. Our findings help to understand what really matters to patients and provide specific insights into the early stage of RA, which should be addressed by clinicians of different disciplines from the start of treatment onwards.

"Mastering a New Life Situation" - Patients' Preferences of Treatment Outcomes in Early Rheumatoid Arthritis - A Longitudinal Qualitative Study.

PURPOSE: To explore patients' preferred treatment outcomes during their first two years with rheumatoid arthritis (RA). PATIENTS AND METHODS: A qualitative, longitudinal, multicenter study with interviews at two time points was performed in Sweden. Individual interviews were conducted at time point 1 with 31 patients with RA, defined as disease duration of ≤1 year and treatment for 3-7 months. Seven focus group interviews and five individual interviews were conducted at time point 2 with 22 patients 12-20 months after treatment initiation. The interviews were analyzed using the Qualitative Analysis Guide of Leuven. A core category with four related concepts emerged. RESULTS: The core finding of patient-preferred treatment outcomes was "mastering a new life situation". Patients preferred to experience control of the disease by controlling the symptoms and by experiencing absence of disease. To experience autonomy by regaining former activity level, experiencing independence, and being empowered was another preferred outcome. Patients preferred to regain identity through being able to participate, experience well-being, and regain former self-image. To experience joy in everyday life through vitality and believing in the future was another preferred outcome. Patients' preferences developed over time from the acute phase of controlling the symptoms and wanting to return to the life they lived prior to diagnosis, to a more preventive way of self-management and empowerment to master the new life situation. CONCLUSION: The patients' preferred treatment outcomes during the first two years with RA were to master their new life situation and changed from a preference to return to a life lived prior disease onset, to a preference of living with quality of life, despite RA. This study increases the understanding of patients' preferred treatment outcomes in the early disease course and can be a foundation for tailoring interventions to be more person-centered and to improve long-term treatment outcomes.

Callers' perceptions of their contact with a rheumatology telephone helpline.

BACKGROUND: Telephone helplines are useful for improving patients' access to healthcare services and reducing the need for frequent face-to-face contact with healthcare professionals. Little is known about how people who phone a helpline perceive the encounter. OBJECTIVES: The aims of the present study were to describe the variation in how callers perceive their encounter with a rheumatology telephone helpline. METHODS: The study had a descriptive, qualitative design and used a phenomenographic approach, comprising 27 semi-structured telephone interviews with callers to Rheuma Direct, a rheumatology telephone helpline with specially trained nurses. The callers comprised 22 women and five men, aged 22-89 years (mean 54 years). RESULTS: The callers phoned Rheuma Direct when they had problems obtaining answers to questions on the internet or from healthcare professionals. Three descriptive categories emerged: constructive dialogue, specialized competence and applicability. The callers perceived that it was a constructive dialogue when they were able to discuss their concerns with someone, received emotional support, felt reassured and were satisfied with the information provided. They perceived specialized competence when the nurses were experienced and skilful, the advice provided complemented previously received information and when they had more knowledge after the call. The callers perceived that Rheuma Direct had applicability because it was easy to access and they could make different choices before, during and after the telephone call. CONCLUSIONS: Callers to a rheumatology telephone helpline perceived it as a valuable complement to other sources of information, and felt that it could provide them with the tools to manage their disease better, as well as future contacts with healthcare professionals.