Sustained employment, work disability and work functioning in CKD patients: a cross-sectional survey study.

INTRODUCTION: Kidney failure negatively affects opportunities for work participation. Little is known about work functioning of employed CKD patients. This study investigates work-related outcomes, and examines associations between patient characteristics and employment status. METHODS: We performed a cross-sectional survey study in nine nephrology outpatient clinics in the Netherlands among working age (18-67 years) CKD Stage G3b-G5, dialysis and transplant patients (n = 634; mean age 53.4 years (SD 10); 53% male; 47% Stage G3b-G5, 9% dialysis, 44% transplantation). We assessed employment status, work disability, work-related characteristics (i.e., work situation, working hours, job demands), work functioning (i.e., perceived ability to work, productivity loss, limitations in work), work environment (i.e., work accommodations, psychosocial work environment), as well as health status and fatigue. RESULTS: Sixty-five percent were employed reporting moderate work ability. Of those, 21% received supplementary work disability benefits, 37% were severely fatigued, 7% expected to drop out of the workforce, and 49% experienced CKD-related work limitations. Work accommodations included reduced working hours, working at a slower pace, adjustment of work tasks or work schedule, and working from home. Multivariable analysis of sustained employment showed associations with younger age, male gender, higher level of education, better general and physical health and pre-emptive transplantation. Transplant patients had the highest work ability and highest expectation to maintain work. Dialysis patients had the highest productivity loss and perceived the most limitations regarding functioning in work. Stage G3b-G5 patients reported the lowest social support from colleagues and highest conflict in work and private life. CONCLUSIONS: Employed CKD patients experience difficulties regarding functioning in work requiring adjustment of work or partial work disability. In addition to dialysis patients, stage G3b-G5 patients are vulnerable concerning sustained employment and work functioning.

Employment Status and Work Functioning among Kidney Transplant Recipients.

BACKGROUND AND OBJECTIVES: To date, employment figures of kidney transplant recipients in Europe are inconsistent. Additionally, little is known about work functioning of employed kidney transplant recipients and work functioning trajectories before and after transplantation. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Data from the ongoing TransplantLines Biobank and Cohort study and from community-dwelling employed adults were used. Health-related work functioning of kidney transplant recipients was assessed with the Work Role Functioning Questionnaire 2.0 and compared with potential kidney donors and community-dwelling employed adults. RESULTS: We included 668 kidney transplant recipients of working age (59% men, age 51±11 years) at median 3 (interquartile range, 2-10) years after transplantation, 246 potential kidney donors of working age (43% men, age 53±9 years), and 553 community-dwelling employed adults (70% men, age 45±11 years). The proportion of employed kidney transplant recipients was lower compared with potential kidney donors (56% versus 79%). If employed, the work functioning score of kidney transplant recipients was slightly lower compared with employed potential kidney donors yet higher compared with community-dwelling employed adults (medians 91 [interquartile range, 76-98], 94 [interquartile range, 85-99], and 88 [interquartile range, 79-95], respectively). Backward linear regression analyses revealed that lower educational level, having a kidney from a deceased donor, presence of tingling or numbness of hands or feet, presence of concentration/memory problems, presence of anxiety, and presence of severe fatigue were independently associated with lower work functioning among kidney transplant recipients. Additional subgroup analyses showed that work functioning scores were lower before transplantation than at 12 months after transplantation (83 [interquartile range, 66-93] versus 92 [interquartile range, 88-98], respectively; P=0.002). CONCLUSIONS: Stable employed kidney transplant recipients report to function well at work. In addition, this study shows that self-reported work functioning is higher after successful kidney transplantation compared with before transplantation. CLINICAL TRIAL REGISTRY NAME AND REGISTRATION NUMBER: TransplantLines Biobank and Cohort study, NCT03272841 PODCAST: This article contains a podcast at https://www.asn-online.org/media/podcast/CJASN/2022_09_26_CJN05560522.mp3.

[Experience of first COVID-19 patients in Northern part of the Netherlands: Information provision, source investigation, contact tracing and home isolation]. / Eerste covid-19-patiënten in Noord-Nederland.

OBJECTIVE: The aim of this study was to investigate how patients experience the information, the source investigation and contact tracing and the measures in isolation at the start of a pandemic. DESIGN: Secondary analysis of semi-structured interviews was conducted as part of a larger exploratory mixed-methods study on COVID-19 patient experiences. METHODS: Semi-structured interviews were conducted with 29 people from Friesland and Groningen who tested positive for SARS-CoV-2 between 9 March and 3 April 2020, recruited via maximum variation sampling. Thematic analysis was used. RESULTS: The following themes emerged from the analysis: 1) Information: Conflicting information by different advisors led to a lack of clarity. Patients admitted to hospital usually felt uninformed about the rules of home isolation after discharge. 2) Investigation into the source of infection: For most it was unclear whether and how this investigation took place. Some expected feedback on their suggestions. 3) Informing contacts: Not everyone felt able to inform the right contacts. Some felt stigmatized. 4) Living with the measures in home isolation: The recommended living rules were often not fully applied. Some patients felt insufficiently supported. CONCLUSION: Our study shows that not all COVID-19 patients felt well cared for at the start of the outbreak. Scaling down monitoring by the public health service can mean that questions about source and contact investigation and isolation remain unanswered or are answered by others. This leads to conflicting information and non-compliance with measures. The supervision of patients in isolation should be better guarded.

Barriers to and Facilitators of Sustained Employment: A Qualitative Study of Experiences in Dutch Patients With CKD.

RATIONALE & OBJECTIVE: Although patients with chronic kidney disease (CKD) are at risk for work disability and loss of employment, not all experience work disruption. We aimed to describe the barriers to and facilitators of sustained employment experienced by Dutch patients with CKD. STUDY DESIGN: Qualitative study using semistructured interviews. SETTING & PARTICIPANTS: 27 patients with CKD glomerular filtration rate categories 3b-5 (G3b-G5) from 4 nephrology outpatient clinics in The Netherlands. ANALYTICAL APPROACH: Content analyses with constant comparison of interview data based on the International Classification of Functioning, Disability and Health framework. RESULTS: Participants were 6 patients with CKD G3b-G4, 8 patients receiving maintenance dialysis, and 13 patients with functioning kidney transplants. We identified health-related barriers (symptoms, physical toll of dialysis/transplantation, limited work capacity) and facilitators (few physical symptoms, successful posttransplantation recovery, absence of comorbidities, good physical condition), personal barriers (psychological impact, limited work experience) and facilitators (positive disposition, job satisfaction, work attitude, person-job fit), and environmental barriers and facilitators. Environmental barriers were related to nephrology care (waiting time, use of a hemodialysis catheter) and work context (reorganization, temporary contract, working hours, physical demands); environmental facilitators were related to nephrology care (personalized dialysis, preemptive transplant), work context (large employer, social climate, job requiring mental rather than physical labor, flexible working hours, adjustment of work tasks, reduced hours, remote working, support at work, peritoneal dialysis exchange facility), and support at home. Occupational health services and social security could be barriers or facilitators. LIMITATIONS: The study sample of Dutch patients may limit the transferability of these findings to other countries. CONCLUSIONS: The wide range of barriers and facilitators in all International Classification of Functioning, Disability and Health components suggests great diversity among patients and their circumstances. These findings underline the importance of personalized nephrology and occupational health care as well as the importance of individually tailored workplace accommodations to promote sustained employment for patients with CKD.

Experiences of case managers in providing person-centered and integrated care based on the Chronic Care Model: A qualitative study on embrace.

BACKGROUND: Due to the rise in the number of older adults within the population, healthcare demands are changing drastically, all while healthcare expenditure continues to grow. Person-centered and integrated-care models are used to support the redesigning the provision of care and support. Little is known, however, about how redesigning healthcare delivery affects the professionals involved. OBJECTIVES: To explore how district nurses and social workers experience their new professional roles as case managers within Embrace, a person-centered and integrated-care service for community-living older adults. METHODS: We performed a qualitative study consisting of in-depth interviews with case managers (district nurses, n = 6; social workers, n = 5), using a topic-based interview guide. Audiotaped interviews were transcribed verbatim and analyzed using qualitative content analysis. RESULTS: The experiences of the case managers involved four major themes: 1) the changing relationship with older adults, 2) establishing the case-manager role, 3) the case manager's toolkit, and 4) the benefits of case management. Within these four themes, subthemes addressed the shift to a person-centered approach, building a relationship of trust, the process of case management, knowledge and experience, competencies of and requirements for case managers, and the differences in professional background. DISCUSSION: We found that this major change in role was experienced as a learning process, one that provided opportunities for personal and professional growth. Case managers felt that they were able to make a difference, and found their new roles satisfying and challenging, although stressful at times. Ongoing training and support were found to be a prerequisite in helping to shift the focus towards person-centered and integrated care.

Effects of a multidisciplinary group rehabilitation programme on participation of the visually impaired elderly: a pilot study.

PURPOSE: To pilot test the newly developed multidisciplinary group rehabilitation programme Visually Impaired elderly Persons Participating (VIPP). METHOD: A single group pretest-posttest design pilot study included 29 visually impaired persons (≥ 55 years). The intervention (20 weekly meetings) consisted of four components (practical training; education, social interaction, counselling and training of problem-solving skills; individual and group goal setting; home-based exercise programme). Participation was assessed with the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P) and the Impact on Participation and Autonomy (IPA) questionnaire at baseline, immediately and 6 months after the intervention. RESULTS: At scale level, no statistical significant changes over time were found whereas the effect size indicated small effects for restrictions and satisfaction with participation, and a medium effect for autonomy outdoors. At item level, improvements tended to occur in frequency of housekeeping, in restrictions in housekeeping and outdoor activities and in satisfaction with the partner relationship. Satisfaction with leisure indoors and autonomy regarding using leisure time tended to increase as well. CONCLUSIONS: The tentative conclusion of this small-scale pilot study is that the VIPP programme modestly benefits perceived restrictions in participation, satisfaction with participation and autonomy outdoors of the visually impaired elderly. These preliminary findings warrant further investigation.

Determinants of social participation of visually impaired older adults.

PURPOSE: To assess determinants of social participation among visually impaired older adults. METHODS: This cross-sectional study included visually impaired persons (≥55 years; n = 173) who were referred to a low-vision rehabilitation center. Determinants (i.e., sociodemographic, physical, social and psychological factors, and personal values) of participation were identified in four domains of participation: (1) domestic life; (2) interpersonal interactions and relationships; (3) major life areas; and (4) community, social, and civic life. Study participants completed telephone interviews. RESULTS: Age, physical fitness, and helplessness were determinants of participation in domestic life. Social network size was associated with participation in major life areas. The personal value attached to participation (i.e., perceived importance) was a determinant of participation in interpersonal interactions and relationships, major life areas, and community, social and civic life. Vision-related characteristics (i.e., self-perceived vision and degree of visual impairment) were not associated with participation. CONCLUSIONS: Across the participation domains, perceived importance is a major determinant of social participation among visually impaired older adults. Physical health along with social and psychological status, also affect participation. Knowing how participation is determined can be used to develop rehabilitation interventions to enhance participation of visually impaired older adults.

Long-term health and work outcomes of renal transplantation and patterns of work status during the end-stage renal disease trajectory.

INTRODUCTION: The aim of this study was to examine the health- and work outcomes of renal transplant recipients long-term after transplantation as well as the pattern of work status, work ability and disability benefits during the end-stage renal disease (ESRD) trajectory that precedes transplantation. METHODS: 34 transplant recipients completed interviews 3, 13 months and >6 years posttransplantation. Health status (SF-36), work ability (WAI), and fatigue (CIS) were assessed by questionnaires, clinical data were derived from medical charts, and data on functional limitations were extracted from the social security system database. The work status trajectory preceding transplantation was examined retrospectively. RESULTS: Of the 34 third wave transplant recipients, 29% were severely fatigued. Compared with the general working population, recipients experienced worse general health and less vitality. Non-working recipients had worse renal function and general health, and more limitations in physical functioning compared to working recipients. The WAI score indicated moderate work ability for 60% of the employed recipients. Although 67% were employed (45% parttime), 30% of those working still received some disability benefits. Social insurance physicians found variable levels of functional limitations. The mean work status trajectory showed more sickness absence and less work ability during dialysis, but after transplantation, both work status and work ability generally improved. CONCLUSIONS: Transplant recipients have a compromised health status which leads to functional limitations and disability. Although work status improved after transplantation, a substantial number of the transplant recipients received disability benefits. The negative health consequences of anti-rejection medications may play an important role in long-term work ability. These results indicate that a 'new' kidney has advantages over dialysis with respect to work, but does not necessarily leads to 'normal' work outcomes.

Participation as an outcome measure in psychosocial oncology: content of cancer-specific health-related quality of life instruments.

PURPOSE: To examine to what extent the concept and the domains of participation as defined in the International Classification of Functioning, Disability and Health (ICF) are represented in general cancer-specific health-related quality of life (HRQOL) instruments. METHODS: Using the ICF linking rules, two coders independently extracted the meaningful concepts of ten instruments and linked these to ICF codes. RESULTS: The proportion of concepts that could be linked to ICF codes ranged from 68 to 95%. Although all instruments contained concepts linked to Participation (Chapters d7-d9 of the classification of 'Activities and Participation'), the instruments covered only a small part of all available ICF codes. The proportion of ICF codes in the instruments that were participation related ranged from 3 to 35%. 'Major life areas' (d8) was the most frequently used Participation Chapter, with d850 'remunerative employment' as the most used ICF code. CONCLUSIONS: The number of participation-related ICF codes covered in the instruments is limited. General cancer-specific HRQOL instruments only assess social life of cancer patients to a limited degree. This study's information on the content of these instruments may guide researchers in selecting the appropriate instrument for a specific research purpose.

Loneliness and self-management abilities in the visually impaired elderly.

OBJECTIVE: To describe the degree of loneliness among the visually impaired elderly and to make a comparison with a matched reference group of the normally sighted elderly. In addition, we examined self-management abilities (SMAs) as determinants of loneliness among the visually impaired elderly. METHOD: In a cross-sectional study, 173 visually impaired elderly persons completed telephone interviews. Loneliness and SMAs were assessed with the Loneliness Scale of De Jong Gierveld and the SMAS-30, respectively. RESULTS: The prevalence of loneliness among the visually impaired elderly was higher compared with the reference group (50% vs. 29%; p < .001). Multivariate hierarchical regression analysis showed that the SMA self-efficacy, partner status, and self-esteem were determinants of loneliness. Severity and duration of visual impairment had no effect on loneliness. DISCUSSION: The relationship between SMAs (i.e., self-efficacy) and loneliness is promising, as SMAs can be learned through training. Consequently, self-management training may reduce feelings of loneliness.

Participation of the elderly after vision loss.

PURPOSE: To assess the degree of participation of the visually impaired elderly and to make a comparison with population-based reference data. METHOD: This cross-sectional study included visually impaired elderly persons (≥55 years; n = 173) who were referred to a low-vision rehabilitation centre. Based on the International Classification of Functioning, Disability and Health (ICF) participation in: (1) domestic life, (2) interpersonal interactions and relationships, (3) major life areas, and (4) community, social and civic life was assessed by means of telephone interviews. In addition, we assessed perceived participation restrictions. RESULTS: Comparison with reference data of the elderly showed that visually impaired elderly persons participated less in heavy household activities, recreational activities and sports activities. No differences were found for the interpersonal interactions and relationships domain. Participants experienced restrictions in household activities (84%), socializing (53%), paid or voluntary work (92%), and leisure activities (88%). CONCLUSIONS: Visually impaired elderly persons participate in society, but they participate less than their peers. They experience restrictions as a result of vision loss. These findings are relevant, since participation is an indicator for successful aging and has a positive influence on health and subjective well-being.

Factors determining social participation in the first year after kidney transplantation: a prospective study.

BACKGROUND: This study describes changes in social participation in the first year after kidney transplantation and examines the influence of clinical factors, health status, transplantation-related symptoms, and psychological characteristics on change in social participation. METHODS: A prospective study was performed on a cohort of primary kidney transplant recipients, transplanted between March 2002 and March 2003. Data on participation in obligatory activities (i.e., employment, education, household tasks) and leisure activities (i.e., volunteer work, assisting others, sports, clubs/associations, recreation, socializing, going out) were collected by in-home interviews (n=61) at 3 months (T1) and 1 year posttransplantation (T2). Analysis of covariance was performed. RESULTS: Data showed an increase in participation in obligatory activities and diversity of leisure participation between T1 and T2, although pre-end-stage renal disease level was not regained and differed from the general population. On T1, the majority of employed recipients were on sick leave, but returned to work on T2. Employment rate remained stable. An increase in obligatory participation was predicted by clinical factors (i.e., peritoneal dialysis, initial hospitalization), whereas change in leisure participation was related to serum albumin and cognitive capacity. No effects were found for type of donation, comorbidity, and renal function. CONCLUSIONS: We found that mainly clinical factors were associated with an increase in participation in society. Although health-status related factors and the psychological attribute self-efficacy may be related to recovery of social participation, their effect was outweighed by the strength of clinical predictors in multivariate analysis.

Social participation after successful kidney transplantation.

PURPOSE: To explore and describe the degree of social participation after kidney transplantation and to examine associated factors. METHOD: A cross-sectional study on 239 adult patients 1-7.3 years after kidney transplantation was performed via in-home interviews on participation in obligatory activities (i.e., employment, education, household tasks) and leisure activities (volunteer work, assisting others, recreation, sports, clubs/associations, socializing, going out). RESULTS: Kidney transplantation patients had a lower educational level, spent less time on obligatory activities, had part-time jobs more often, and participated less in sports compared to a control group from the general population. No difference was found in socializing, church attendance, volunteer work and going out. Multivariate regression analysis showed a negative association of age and a positive association of educational status and time since transplantation with obligatory participation. Multivariate logistic regression showed positive associations of education and time since transplantation with volunteer work; age was negatively and education positively associated with sports and going out, whereas living arrangement was also associated with going out. CONCLUSIONS: Although kidney transplantation patients participate less in employment and sports, they do participate in household tasks, volunteer work, going out, socializing and other leisure activities. Participation is associated with factors as age, educational status and time since transplantation.

Social participation and employment status after kidney transplantation: a systematic review.

OBJECTIVE: To summarize and assess literature regarding social participation of recipients after successful kidney transplantation. METHODS: A systematic review including a literature search in Medline (1980-2003) and five other databases, and assessment of methodological quality of selected studies by two reviewers applying a checklist of twelve criteria. RESULTS: Seventeen studies out of 1443 identified references were selected. Quality scores for internal validity ranged from 0% to 50% (median 20%). Employment was the most used indicator of social participation and two studies briefly reported on vacation and recreation. Employment rate ranged from 18% to 82%, however differences in defining categories of employment or lack of description were present. Study populations were heterogeneous with regard to demographic and clinical characteristics. Three studies identified pre-transplant employment status as predictor of post-transplant employment. Other potential risk factors were not consistent across studies. CONCLUSION: Measurement of social participation focuses mainly on employment status. Quality assessment revealed shortcomings in reporting and validity of studies, whereby valid conclusions regarding the degree of social participation after kidney transplantation cannot be drawn. Future research should supplement the focus on employment status by examining other aspects of social participation as well as potential risk factors.

Clinical factors influencing participation in society after successful kidney transplantation.

BACKGROUND: Little information is available on the degree of actual social functioning after successful kidney transplantation. Moreover, information on factors that influence participation in social activities is scarce. The aim of this study was to examine the influence of clinical factors on social outcome. METHODS: A retrospective study was performed on a cohort of primary kidney transplantation patients, transplanted between 1996 and 2001. Cross-sectional data on participation in obligatory activities (i.e. employment, education, household tasks), leisure activities (i.e. volunteer work, assisting others, sports, clubs/associations, recreation, socializing, going out) and change in participation were collected by in-home interviews (n=239). Multivariate regression analysis was performed. RESULTS: Thirty-six percent of the patients scored low on obligatory participation and only 52.4% was employed. Patients were actively involved in a wide range of leisure activities. Twenty-six percent participated in sports. Multivariate analysis (age-, sex-, and education-adjusted) of participation in obligatory activities showed negative associations with advanced age (P<0.01), comorbidity (previous cardiovascular events; P<0.01) and cadaveric transplantation (P<0.01). There was a positive association with time since transplantation (P<0.01). Multivariate analysis of diversity of participation in leisure activities and perceived change in participation after transplantation showed no statistically significant associations with clinical factors. CONCLUSIONS: Besides age, clinical factors such as type of donation (cadaveric versus living), comorbidity (previous cardiovascular events), and time since transplantation were associated with participation in obligatory activities such as employment, education and household tasks. Diversity of leisure activities and change in participation was not affected by clinical factors.