Patient perceived needs and experiences of person-centered care in patients with inflammatory arthritis

BACKGROUND: Health care is shifting toward a person-centered care (PCC) approach. For implementation of PCC, there may be a special role for nurse practitioners (NPs). PURPOSE: The aim of this study was to explore the patient-perceived levels of and needs for of PCC in inflammatory arthritis patients who visited the NP at the outpatient clinic of an academic hospital in the Netherlands. METHODS: A cross-sectional study was performed. Disease characteristics were inventoried from the patient records. Patients filled out the PCCoc/rheum instrument, an instrument to measure patient perceived PCC, and a questionnaire based on the 14 life areas of the Self-Management Web, extended with areas including pain, fatigue, and night's rest. Participants were asked which life areas caused problems, and whether these problems were discussed. Mean values were calculated for normally distributed data and medians for nonnormally distributed data. RESULTS: Most of the patients had well-controlled disease (86.1%). The mean score of the PCCoc/rheum was 55.3 (SD 8.1). Patients experienced most problems in life areas fatigue (37.3%) and pain (35.3%), these were also the life areas that were most often addressed at consultation. The life areas that gave problems and that were least addressed during consultation were intimate relationships & sexuality (66.7%) and household chores (58.8%). CONCLUSIONS: Despite an overall high level of patient perceived PCC delivered by NPs, patient with low disease activity frequently reported problems in life areas not addressed at consultation. IMPLICATIONS FOR PRACTICE: Implementation of the Self-Management Web and changing the focus of NP consultations may help to improve accommodating individual patient needs

The self-regulation skills instrument in transplantation (SSIt):Development and measurement properties of a self-report self-management instrument

Objective: To develop a self-management instrument for organ transplant recipients that incorporates self-regulations skills and to determine its measurement properties. Methods: The instrument includes concepts from social cognitive models: problem awareness, attitude, self-efficacy, motivation, social support, goal setting, goal pursuit, skills and goal affect. The measurement properties were evaluated based on the COSMIN guidelines. Face and content validity were determined through patient assessment, Three-Step Test-Interview and expert assessment using the Content Validity Index. Structural validity and reliability were tested using exploratory factor analysis and Cronbach's alpha. Construct validity was tested by comparing subscales with the Health Education Impact Questionnaire (heiQ). Results: After face and content validity assessment 47 items were entered into the exploratory factor analysis. The analysis showed two meaningful factors, with internal consistency of 0.90 and 0.89. Spearman correlations between the subscales and heiQ were moderate (0.55; 0.46). The final version consists of 21 items, divided into two scales: ‘Setbacks’ and ‘Successes’. Conclusions: The Self-regulation skills instrument in transplantation (SSIt) is a valid and reliable instrument to asses necessary skills for self-management after transplantation and may be useful for other patients as well. Practice implications: Insight into self-regulation competencies can help healthcare professionals to tailor self-management support.</p

The self-regulation skills instrument in transplantation (SSIt):Development and measurement properties of a self-report self-management instrument

Objective: To develop a self-management instrument for organ transplant recipients that incorporates self-regulations skills and to determine its measurement properties. Methods: The instrument includes concepts from social cognitive models: problem awareness, attitude, self-efficacy, motivation, social support, goal setting, goal pursuit, skills and goal affect. The measurement properties were evaluated based on the COSMIN guidelines. Face and content validity were determined through patient assessment, Three-Step Test-Interview and expert assessment using the Content Validity Index. Structural validity and reliability were tested using exploratory factor analysis and Cronbach's alpha. Construct validity was tested by comparing subscales with the Health Education Impact Questionnaire (heiQ). Results: After face and content validity assessment 47 items were entered into the exploratory factor analysis. The analysis showed two meaningful factors, with internal consistency of 0.90 and 0.89. Spearman correlations between the subscales and heiQ were moderate (0.55; 0.46). The final version consists of 21 items, divided into two scales: ‘Setbacks’ and ‘Successes’. Conclusions: The Self-regulation skills instrument in transplantation (SSIt) is a valid and reliable instrument to asses necessary skills for self-management after transplantation and may be useful for other patients as well. Practice implications: Insight into self-regulation competencies can help healthcare professionals to tailor self-management support.</p

Qualitative evaluation of a form for standardized information exchange between orthopedic surgeons and occupational physicians

BACKGROUND: Both occupational physicians and orthopedic surgeons can be involved in the management of work relevant musculoskeletal disorders. These physicians hardly communicate with each other and this might lead to different advices to the patient. Therefore, we evaluated a standardized information exchange form for the exchange of relevant information between the orthopedic surgeon and the occupational physician. The main goals of this qualitative study are to evaluate whether the form improved information exchange, whether the form gave relevant information, and to generate ideas to further improve this information exchange. METHODS: The information exchange form was developed in two consensus meetings with five orthopedic surgeons and five occupational physicians. To evaluate the information exchange form, a qualitative evaluation was set up. Structured telephone interviews were undertaken with the patients, interviews with the physicians were face-to-face and semi-structured, based on a topic list. These interviews were recorded and literally transcribed. Each interview was analyzed separately in Atlas-Ti. RESULTS: The form was used for 8 patients, 7 patients agreed to participate in the qualitative evaluation. All three orthopedic surgeons involved and three of the six involved occupational physicians agreed to be interviewed. The form was transferred to 4 occupational physicians, the other 3 patients recovered before they visited the occupational physician. The information on the form was regarded to be useful. All orthopedic surgeons agreed that the occupational physician should take the initiative. Most physicians felt that the form should not be filled out for each patient visiting an orthopedic surgeon, but only for those patients who do not recover as expected. Orthopedic surgeons suggested that a copy of the medical information provided to the general practitioner could also be provided to occupational physicians. CONCLUSION: The information exchange form was regarded to be useful and could be used in practice. The occupational physician should take the initiative for using this form and most physicians felt the information should only be exchanged for patients who do not recover as expected. That means that the advantage of giving information early in the treatment is lost

The added value of transition programs in Dutch diabetes care: A controlled evaluation study

Purpose: The desirability of evaluating transition programs is widely acknowledged. This study aimed to explore the added value of transitional care investments for young adults with type 1 diabetes mellitus. Design and methods: Based on qualitative data, two groups of diabetes teams were created through cluster analysis: paying more (HI-ATT) versus less attention (LO-ATT) to transitional care. Retrospective controlled evaluation included chart reviews on healthcare use and clinical outcomes; and a survey on young adults' experiences, satisfaction with care, and self-management skills. Results: Data from 320 patients in fifteen diabetes teams were collected; 123 young adults (38.4%) completed a questionnaire. Self-reported outcomes showed that young adults treated by a HI-ATT team felt better prepared for transfer (p < .05). Self-management outcomes did not differ between groups. HI-ATT teams had more scheduled consultations in the year after transfer (p < .05); only 10.6% of all measurements had reached targeted HbA1c scores. Conclusions: Current transitional care investments in Dutch diabetes care did not lead to notable improvements in experiences and outcomes, except for preparation for transfer. The period after transfer, however, is just as important. Attention is required for parent involvement. Practice implications: Transitional care investments should extend beyond the transfer. By educating young adults about the importance of regular clinic attendance and introducing additional person-centered consultations in adult care, nurses may help ensure continuity of care. Nurses could also introduce support programs for parents to prepare for the transition and their change in role, taking into account their continuing partnership

What factors contribute to cancer survivors’ self-management skills? A cross-sectional observational study

Purpose: Many cancer survivors, facing the consequences of their disease and its treatment, have medical and supportive aftercare needs. However, limited knowledge exists regarding the relationship between support needs and survivors' self-management skills. The study aim is to explore factors contributing to cancer survivors’ self-management skills. Methods: A cross-sectional study was conducted among cancer survivors (n = 277) of two outpatient oncology clinics at a university hospital in the Netherlands. Patients with head and neck cancer (n = 55) who had received radiotherapy and cisplatin or cetuximab were included, as well as patients who had undergone hematopoietic stem cell transplantation (n = 222). The primary outcome was self-management skills, assessed using the Partners in Health Scale (PIH), which comprises two subscales: knowledge and coping (PIH-KC), and recognition and management of symptoms, and adherence to treatment (PIH-MSA). Secondary outcomes were quality of life (EORTC QLQ-C30), self-efficacy (SECD6), patient-centered care (CAPHS), and social support (HEIQ). Machine learning-based Random Forest models were employed to construct associative models. Feature Importance (FI) was used to express the contribution to the model. Results: High emotional quality of life (FI = 33.1%), increased self-efficacy (FI = 22.2%), and greater social support (FI = 18.2%) were identified as key factors contributing to cancer survivors' self-management knowledge (PIH-KC). Furthermore, greater support from professionals (FI = 36.1%) and higher self-efficacy (FI = 18.2%) were found to benefit participants’ recognition and management, and therapy adherence (PIH-MSA). Conclusions: A patient-centered relationship between nurses and cancer survivors is essential for therapy adherence and the management of aftercare needs. Training to provide this holistic self-management support is required.</p

Nurse-led self-management support after organ transplantation—protocol of a multicentre, stepped-wedge randomized controlled trial

Background: Recipients of an organ transplantation face a number of challenges and often need to change their health behaviour. Good self-management skills are essential for optimal clinical outcomes. However, few interventions are available to support post-transplant self-management. To fill this gap, we developed a self-management support intervention offered by nurse practitioners. The primary aim of the study is to implement and test the effectiveness of the ZENN intervention in promoting self-management skills among heart, kidney liver and lung transplant recipients in comparison to standard care. The secondary aim is to assess the self-management support skills of nurse practitioners who will deliver the intervention. Methods: This multi-centre stepped-wedge randomized controlled trial will take place from September 2020 until May 2023. All departments will commence with inclusion of patients in the control period. Each department will be randomly assigned to a start date (step in the wedge) to commence the experimental period. Patients in the control period will receive standard care and will be asked to complete questionnaires at baseline (T0), 6 months (T1) and 12 months (T2), to assess self-management, self-regulation, quality of life and adherence. During the experimental period, patients will receive standard care plus the ZENN intervention and receive the same set of questionnaires as participants in the control period. Nurse practitioners will complete a baseline and follow-up questionnaire to assess differences in self-management support skills. Video recordings of outpatient clinic consultations during the control and experimental periods will determine the differences in nurses’ needs-thwarting and needs-supporting skills between the control and experimental period. Discussion: The ZENN intervention could be a useful approach to support patients’ self-management skills after organ transplantation and thus promote clinical outcomes as well as avoid adverse events. Trial registration: Dutch Trial Register NL8469. Registered on March 19, 2020

Profiles of family caregivers of patients at the end of life at home: A Q-methodological study into family caregiver' support needs

Background: Family caregivers of patients at the end of life often experience care-related burden. To prevent caregiver burden and to enhance the capacity to provide care it is important to have insight in their support needs. The purpose of this study was to identify profiles of family caregivers who provide care to patients at the end of life at home. Methods: A Q-methodological study was conducted in which family caregivers ranked 40 statements on support needs and experiences with caregiving. Thereafter they explained their ranking in an interview. By-person factor analysis was used to analyse the rankings and qualitative data was used to support the choice of profiles. A set of 41 family caregivers with a variety on background characteristics who currently or recently provided care for someone at the end of life at home were included. Results: Four distinct profiles were identified; profile (1) those who want appreciation and an assigned contact person; profile (2) was bipolar. The positive pole (2+) comprised those who have supportive relationships and the negative pole (2-) those who wish for supportive relationships; profile (3) those who want information and practical support, and profile (4) those who need time off. The profiles reflect different support needs and experiences with caregiving. Conclusions: Family caregivers of patients at the end of life have varying support needs and one size does not fit all. The profiles are relevant for healthcare professionals and volunteers in palliative care as they provide an overview of the main support needs among family caregivers of patients near the end of life. This knowledge could help healthcare professionals giving support