A nurse-led rheumatology telephone advice line: service redesign to improve efficiency and patient experience.

BACKGROUND: nurse-led telephone advice line (TAL) services have been endorsed by the Royal College of Nursing (RCN) and provide patients and their carers with expert advice and self-management strategies. Identified helpline shortfalls in one rheumatology TAL included a high number of inappropriate calls, calls not recorded in patients' records, and no formal process for assigning calls to nurses. Using RCN guidelines, the service was redesigned by specialist rheumatology nurses to address these issues. METHOD: troubleshooting sessions were used to identify solutions to shortcomings in the helpline processes. Following service redesign, nurse/user feedback was collated, and efficiency savings achieved from reducing face-to-face appointments were calculated. RESULTS: the new TAL received fewer inappropriate calls, was received positively by staff and patients, and saved approximately £354 890 a year for the local clinical commissioning group. CONCLUSION: rheumatology nurses successfully improved a TAL using RCN guidance. The approach could be used by other trusts to improve patient helplines and contribute to the NHS drive for efficiency.

Relations among Pain, Pain Beliefs, and Psychological Well-Being in Patients with Chronic Pain.

BACKGROUND: Chronic pain influencing the quality of life and well-being of the patients are also affected by pain beliefs. Psychological well-being could make a person have positive pain beliefs and these could facilitate patients' coping skills. In the care of the patients with chronic pain, nursing interventions can improve patients' well-being. AIMS: This study aimed to determine the relationship between pain, pain beliefs and psychological well-being in patients with chronic pain. DESIGN: A cross-sectional and relational study. SUBJECTS: This study was conducted with 86 patients with chronic joint pain. METHODS: A convenience sample method was used in the research. Data were gathered using a Personel Information Form, The Pain Beliefs Questionnaire and Psychological Well-being Scale. Frequency, percentage, mean, standard deviation and correlation analysis were used for data assessment. RESULTS: It was found that there was a statistically significant correlation between pain severity and organic pain beliefs, statistically significant negative correlation between frequency and severity of pain and psychological well-being, and statistically significant relationship between organic pain beliefs and the psychological well-being. CONCLUSIONS: Organic pain beliefs and pain intensity affect the psychological well-being of the patients with chronic pain. To increase the psychological well-being level of patients with chronic pain, patients' informations, attitudes and beliefs about pain and pain control should be changed positively. Also, nursing care focused on improving well-being should be provided by nurses. Further studies should be carried out on other factors affecting the well-being of patients as well as pain and pain beliefs on larger samples.

Impact of a nurse led telephone intervention on satisfaction and health outcomes of children with inflammatory rheumatic diseases and their families: a crossover randomized clinical trial.

BACKGROUND: Children suffering from rheumatic disease are faced with multidimensional challenges that affect their quality of life and family dynamics. Symptom management and monitoring of the course of the disease over time are important to minimize disability and pain. Poor disease control and anticipation of the need for treatment changes may be prompted by specialist medical follow-up and regular nurse-led consultations with the patient and families, in which information and support is provided. The purpose of this study was to evaluate the impact of a nurse-led telephone intervention or Telenursing (TN) compared to standard care (SC) on satisfaction and health outcomes of children with inflammatory rheumatic diseases and their parents. METHODS: A multicentered, randomized, longitudinal, crossover trial was conducted with pediatrics outpatients newly diagnosed with inflammatory rheumatic diseases. Participants were randomly assigned to two groups TN and SC for 12 months and crossed-over for the following 12 months. TN consisted of providing individualized affective support, health information and aid to decision making. Satisfaction (primary outcome) and health outcomes were assessed with the Client Satisfaction Questionnaire-8 and the Juvenile Arthritis Multidimensional Assessment Report, respectively. A mixed effect model, including a group x time interaction, was performed for each outcome. RESULTS: Satisfaction was significantly higher when receiving TN (OR = 7.7, 95% CI: 1.8-33.6). Morning stiffness (OR = 3.2, 95% CI: 0.97-7.15) and pain (OR = 2.64, 95% CI: 0.97-7.15) were lower in the TN group. For both outcomes a carry-over effect was observed with a higher impact of TN during the 12 first months of the study. The other outcomes did not show any significant improvements between groups. CONCLUSION: TN had a positive impact on satisfaction and on morning stiffness and pain of children with inflammatory rheumatic diseases and their families. This highlights the importance of support by specialist nurses in improving satisfaction and symptom management for children with inflammatory rheumatisms and their families. TRIAL REGISTRATION: ClinicalTrial.gov identifier: NCT01511341 (December 1st, 2012).

SCORE study: quality indicators for rheumatology nursing clinics.

Nursing clinics in rheumatology (NCR) are organizational care models that provide care centred within the scope of nurses abilities. To analyse patients differences in the knowledge of the disease, adherence to the treatment, quality indicators of the Rheumatology Departments included quality perceived by the patients with and without NCR. National multicenter observational prospective cohort study 1 year follow-up, comparing patients attending rheumatology services with and without NCR. NCR was defined by the presence of: (1) office itself; (2) at least one dedicated nurse; (3) its own appointment schedule, and (4) phone. Variables included were (baseline and 12 months) Batalla, Haynes-Sackett, Morisky-Green and quality perceived tests. In addition, another specific questionnaire was drawn up to collect the healthcare, teaching and research activities of each Rheumatology Department. A total of 393 patients were included; 181 NCR and 212 not NCR, corresponding to 39 units, 21 with NCR and 18 without NCR (age 53 ± 11.8 vs 56 ± 13.5 years). Significant differences in favour of the NCR group were found in Haynes-Sackett (p = 0.033) and Morisky-Green (p = 0.03) tests in the basal visit. Significant differences were found in questions about "the courtesy and/or kindness received by the nurse", being "good or very good" in greater proportion in the NCR group. The publications from the last 5 years were significantly higher in the NCR group in both, national (p = 0.04) and international (p = 0.03) journals. A higher research activity and quality perceived by the patients are observed in the Rheumatology Departments with NCR.

Evaluation of the impact of nursing clinics in the rheumatology services.

Nursing clinics in rheumatology (NCRs) are organisational care models that provide care centred within the scope of a nurse's abilities. To analyse the impact of NCR in the rheumatology services, national multicenter observational prospective cohort studied 1-year follow-up, comparing patients attending rheumatology services with and without NCR. NCR was defined by the presence of: (1) office itself; (2) at least one dedicated nurse; and (3) its own appointment schedule. Variables included were (baseline, 6 and 12 months): (a) test to evaluate clinical activity of the disease, research and training, infrastructure of unit and resources of NCR and (b) tests to evaluate socio-demographics, work productivity (WPAI), use of services and treatments and quality of life. A total of 393 rheumatoid arthritis and ankylosing spondylitis patients were included: 181 NCR and 212 not NCR, corresponding to 39 units, 21 with NCR and 18 without NCR (age 53 + 11.8 vs 56 + 13.5 years). Statistically significant differences were found in patients attended in sites without NCR, at some of the visits (baseline, 6 or 12 months), for the following parameters: higher CRP level (5.9 mg/l ± 8.3 vs 4.8 mg/l ± 7.8; p < 0.005), global disease evaluation by the patient (3.6 ± 2.3 vs 3.1 ± 2.4), physician (2.9 ± 2.1 vs 2.3 ± 2.1; p < 0.05), use of primary care consultations (2.7 ± 5.4 vs 1.4 ± 2.3; p < 0.001) and worse work productivity. The presence of NCR in the rheumatology services contributes to improve some clinical outcomes, a lower frequency of primary care consultations and better work productivity of patients with rheumatic diseases.

Rheumatology telephone advice line - experience of a Portuguese department.

BACKGROUND: Telephone helplines for patients are tool for information and advice. They can contribute to patient's satisfaction with care and to the effectiveness and safety of treatments. In order to achieve this, they need to be adequately adapted to the target populations, as to incorporate their abilities and expectations. AIMS: a) Evaluate the adherence of patients to a telephone helpline managed by nurses in a Portuguese Rheumatology Department, b) Analyse the profile of users and their major needs, c) Analyse the management of calls by the nurses. MATERIAL/METHODS: The target population of this phone service are the patients treated at Day Care Hospital and Early Arthritis Clinic of our department. Nurses answered phone calls immediately between 8am and 4pm of working days. In the remaining hours messages were recorded on voice mail and answered as soon as possible. Details of the calls were registered in a dedicated sheet and patients were requested permission to use data to improve the service, with respect for their rights of confidentiality, anonymity and freedom of decision. RESULTS: In 18 months 173 calls were made by 79 patients, with a mean age of 47.9 years (sd=9.13). Considering the proportions of men and women in the target population, it was found that men called more frequently (M= 32.7% vs F= 20.4%, p=.016). The reasons for these calls can be divided into three categories: instrumental help, such as the request for results of complementary tests or rescheduling appointments (43.9% of calls); counselling on side effects or worsening of the disease/pain (31.2 %); counselling on therapy management (24.9%). Neither sex nor patient age were significantly related to these reasons for calling. Nurses resolved autonomously half (50.3%) of the calls and in 79.8% of the cases there was no need for patient referral to other health services. CONCLUSIONS: About a quarter of patients adhered to the telephone helpline.. Patients called to obtain support in the management of disease and therapy or to report side effects and/or symptom aggravation in addition to reasonable instrumental reasons. This suggests that this service may provide important health gains, in addition to comfort for the patient.

Os desafios da enfermagem reumatológica: uma perspectiva emergente no cuidado / The challenges of rheumatologic nursing: a perspective on emerging care / Los retos de la enfermería reumatológica: una perspectiva en el cuidado emergente

As doenças crônicas compõem um conjunto de condições crônicas que em geral estão relacionadas a causas múltiplas e apresentam curso clínico que muda ao longo do tempo, com possíveis períodos de agudização, podendo gerar incapacidades. Requerem intervenções associadas a mudanças de estilo de vida, em um processo de cuidado contínuo que nem sempre leva à cura. O presente artigo teve por objetivo apresentar considerações acerca dos desafios da enfermagem no cuidado aos pacientes com doenças crônicas na área da reumatologia e descrever as principais estratégias para promover uma atenção mais eficiente para esse grupo. Pode-se concluir que melhorar os cuidados de saúde para os portadores de doenças crônicas, aqui destacadas as reumatológicas, vai exigir implementação de diretrizes mais eficazes e redesenho de processos e sistemas de oferta de ações e serviços.

Chronic diseases comprise a group of chronic conditions that are usually related to multiple causes and present clinical courses that change over time, with possible exacerbation periods, which can generate disabilities. They require interventions associated with changes in lifestyle, in a process of continuous care that does not always lead to a cure. This paper aims at considering the challenges to nursing in the care of patients with chronic diseases in the field of rheumatology and at describing the main strategies to promote more effective care to that group. We can conclude that improving health care for patients with chronic diseases, such as the rheumatic ones highlighted here, requires both the implementation of more effective policies and the redesigning of processes and supply systems of actions and services.

Las enfermedades crónicas constituyen un grupo de condiciones crónicas que por lo general están relacionadas con múltiples causas y presentan curso clínico que cambia con el tiempo, con posibles períodos de exacerbación, que pueden generar discapacidades. Requieren intervenciones asociadas a cambios en el estilo de vida, en un proceso de atención continua que ni siempre conduce a una cura. Este trabajo tuvo como objetivo presentar las consideraciones sobre los retos de la enfermería en el cuidado de pacientes con enfermedades crónicas en el campo de la reumatología y describir las principales estrategias para promover una atención más eficaz a ese grupo. Se puede concluir que la mejora de la atención de salud para los pacientes con enfermedades crónicas, aquí destacadas las reumáticas, requerirá la aplicación de políticas más eficaces y rediseño de procesos y sistemas de oferta de acciones y servicios.

Impact of a telenursing service on satisfaction and health outcomes of children with inflammatory rheumatic diseases and their families: a crossover randomized trial study protocol.

BACKGROUND: Pediatric rheumatic diseases have a significant impact on children's quality of life and family functioning. Disease control and management of the symptoms are important to minimize disability and pain. Specialist clinical nurses play a key role in supporting medical teams, recognizing poor disease control and the need for treatment changes, providing a resource to patients on treatment options and access to additional support and advice, and identifying best practices to achieve optimal outcomes for patients and their families. This highlights the importance of investigating follow-up telenursing (TN) consultations with experienced, specialist clinical nurses in rheumatology to provide this support to children and their families. METHODS/DESIGN: This randomized crossover, experimental longitudinal study will compare the effects of standard care against a novel telenursing consultation on children's and family outcomes. It will examine children below 16 years old, recently diagnosed with inflammatory rheumatic diseases, who attend the pediatric rheumatology outpatient clinic of a tertiary referral hospital in western Switzerland, and one of their parents. The telenursing consultation, at least once a month, by a qualified, experienced, specialist nurse in pediatric rheumatology will consist of providing affective support, health information, and aid to decision-making. Cox's Interaction Model of Client Health Behavior serves as the theoretical framework for this study. The primary outcome measure is satisfaction and this will be assessed using mixed methods (quantitative and qualitative data). Secondary outcome measures include disease activity, quality of life, adherence to treatment, use of the telenursing service, and cost. We plan to enroll 56 children. DISCUSSION: The telenursing consultation is designed to support parents and children/adolescents during the course of the disease with regular follow-up. This project is novel because it is based on a theoretical standardized intervention, yet it allows for individualized care. We expect this trial to confirm the importance of support by a clinical specialist nurse in improving outcomes for children and adolescents with inflammatory rheumatisms. TRIAL REGISTRATION: ClinicalTrial.gov identifier: NCT01511341 (December 1st, 2012).

Quality of care standards for nursing clinics in rheumatology.

BACKGROUND: Nursing clinics in rheumatology (NCR) are organizational models in the field of nursing care. There are various NCR models, but there is no consensus on its operational definition. Our objective is to develop quality standards to define and characterize a NCR. METHOD: Two-round Delphi method. The panel consisted of 67 experts: Rheumatologists and nurses of the nursing working group of the Spanish Society of Rheumatology (SSR). The Delphi questionnaire was developed after a literature and experience review from previous SSR projects. The questionnaire consists of 7 sections: general considerations, standards of structure, process, treatment and monitoring, health education, training and research and quality of care. Each item was scored from 1 (least important) to 9 (most important) or by assigning a number (e.g., waiting days). The degree of agreement among the experts was categorized according to the coefficient of variation (CoV) between very high (CoV≤25%) and very low (CoV>100%). RESULTS: The second round questionnaire (182 items) was answered by 46 panelists (34 rheumatologists and 12 nurses). A very important agreement was reached on the general standards of structure, process, treatment and monitoring, health education and quality of care. Less agreement was observed on standards related to training time, number of recommended nurses' research projects and publications. CONCLUSION: The standards developed in this study would be useful for establishing desirable quality standards of structure and process, and criteria for clinical work, research and teaching that can be used to develop and evaluate the NCRs.

Effects of a self-care promoting problem-based learning programme in people with rheumatic diseases: a randomized controlled study.

AIM: To evaluate the effects of a self-care promoting problem-based learning programme for people with rheumatic diseases in terms of health-related quality of life, empowerment, and self-care ability. BACKGROUND: Individuals with rheumatoid arthritis express a great need for education and support in adapting to the disease, but the average qualities of studies about patient education interventions are not high. There is no evidence of long-term benefits of patient education. DESIGN: Randomized controlled trial. METHODS: A randomized controlled design was selected with test at baseline, 1-week and 6-month post-interventions after completed the 1-year programme. The tests consisted of validity and reliability tested instruments. The participants were randomly assigned in spring 2009 to either the experimental group (n = 54) or the control group (n = 148). The programme was running alongside the standard care the participants received at a rheumatology unit. Parametric and non-parametric tests were used in the analyses. RESULTS: The participants in the experimental group had statistically significant stronger empowerment after participation in the self-care promoting problem-based learning programme compared with the control group, at the 6-month post-intervention. Approximately, two-thirds of the participants in the experimental group stated that they had implemented lifestyle changes due to the programme. CONCLUSION: The self-care promoting problem-based learning programme enabled people with rheumatic diseases to improve their empowerment compared with the control group. It is important to continue to develop problem-based learning in patient education to find the very best way to use this pedagogical method in rheumatology care.

Current practice and barriers to the management of sexual issues in rheumatology: results of a survey of health professionals.

OBJECTIVES: To explore multidisciplinary health professionals' (HPs) management of disease-related sexual issues in patients with rheumatic diseases, including their perceptions and assessments, and identify factors that prevent HPs from addressing sexuality as a topic with patients. METHODS: A self-constructed questionnaire was sent to 647 nurses, physicians, physiotherapists, occupational therapists, social workers, and psychologists working within rheumatology care. A multivariate logistic regression model of significant determinants for initiating sexual topics with patients was built. RESULTS: The mean age of the responders (n = 274, 42% response rate, 87% female) was 46 years. While 96% considered sexuality a relevant topic in rheumatology care, 71% seldom/never raised the topic. The patient was the main initiator (53%), and 88% of HPs gave the patient responsibility to initiate. The HPs with relevant education in sexuality were significantly more comfortable talking about sexuality (p < 0.001) and raised sexual issues significantly more often (p < 0.001). In the multivariate analyses, higher age [odds ratio (OR) 3.69], having relevant education (OR 3.16), and being comfortable to some extent (OR 3.62) or to a large extent (OR 5.58) remained significant predictors to initiating sexual topics. CONCLUSIONS: Although HPs regarded sexuality as a relevant topic in rheumatic health care, they seldom raised the topic in consultations. Those with further education in sexuality addressed sexual issues more frequently and felt more comfortable. Correspondingly, the majority of respondents requested more education. Such training should be part of the basic HPs' education, as well as part of postgraduate courses.

Patient satisfaction in three clinics managing long-term conditions.

People with long-term conditions are frequent visitors to outpatient clinics. In order that they get the best out of their visits, the health professionals taking care of them need to understand their experiences and work towards service improvements. A survey of 3 clinics (HIV, rheumatology, diabetes) was undertaken using a set of three simple, open questions. A total of 147 people responded that, above all, care, attention, friendliness and efficiency were their most valued experiences. Shorter waiting times and cheaper car parking came up most frequently as sources of dissatisfaction. The study concludes that there were no distinct differences in the experiences of the patients in each clinic. All care needs were relatively simple and, on the whole, met.

Development of a structured on-site nursing program for training nurse specialists in rheumatology.

There is currently no structured system for nurses or allied health professionals to undertake further training to become a nurse specialist (NSp) or nurse practitioner (NP) in rheumatology on-site, while working in a district general hospital setting. These shortcomings have prompted us to develop a structured pathway that could be followed by staff nurses who wish to become NSp in rheumatology. The proposed pathway aims to assist the nurses or therapists (physiotherapists, psychologists, occupational therapist, podiatrists, etc.) to develop a sound knowledge based on the rationale, safety, and high quality clinical care when monitoring of patients taking disease-modifying anti-rheumatic drugs (DMARDs) to ensure they acquire skills enabling them to provide safe, evidence-based effective patient-centered care. Near the end of the pathway, the trainee would be expected to have an understanding of the particularities of chronic arthritis conditions as well as screening, assessment, and monitoring of patients receiving DMARDs and biological agents. Tests for competencies are included and certification may be considered.

[The role of the nurse in pediatric rheumatology]. / Le rôle de l'infirmière en rhumatologie pédiatrique.

With regard to the care of children with a rheumatic pathology, the nurse is notably responsible for taking charge of patients and their family and leading therapeutic education workshops for parents and children. She teaches the parents or the child how to administer injections, respect hygiene rules and use analgesic methods.

Experiences of health-promoting self-care in people living with rheumatic diseases.

AIM: This paper is a report of a study that explores and describes the meaning of the phenomenon of health-promoting self-care as experienced by people living with rheumatic diseases. BACKGROUND: People with rheumatic diseases estimate health status as low and health belief and health status influence self-care behaviours. Several self-care behaviours are used in the efforts to mitigate the diseases. METHOD: The study had a descriptive phenomenological approach based on a reflective life-world perspective. Data were gathered in 2007 by unstructured open-ended interviews with 12 individuals living with rheumatic diseases. FINDINGS: The meaning of health-promoting self-care as experienced by people living with rheumatic diseases was that self-care takes place against a background of continual hope and belief to influence health in positive ways. Self-care was a way of life and implied being ready to understand and respond to signals from the body. Three inter-related constituents elucidated their experiences: dialogue, power struggle and choice. Self-care was experienced as dialogues with the body and with the immediate environment. In order to respond to signals from the body, power struggles were required to be entered into when fighting the diseases. Choices were required to be made and things that were beneficial for the body were prioritized. CONCLUSION: In this study, the meaning of health-promoting self-care as experienced by people living with rheumatic diseases was that self-care was a way of life. This meant to be ready to understand and respond to signals from the body. Self-care required dialogues, power struggles and choices.