BackgroundSelf-reported outcome instruments in health research have become increasingly important over the last decades. Occupational therapy interventions often focus on occupational balance. However, instruments to measure occupational balance are scarce. The aim of the study was therefore to develop a generic self-reported outcome instrument to assess occupational balance based on the experiences of patients and healthy people including an examination of its psychometric properties.MethodsWe conducted a qualitative analysis of the life stories of 90 people with and without chronic autoimmune diseases to identify components of occupational balance. Based on these components, the Occupational Balance-Questionnaire (OB-Quest) was developed. Construct validity and internal consistency of the OB-Quest were examined in quantitative data. We used Rasch analyses to determine overall fit of the items to the Rasch model, person separation index and potential differential item functioning. Dimensionality testing was conducted by the use of t-tests and Cronbach’s alpha.ResultsThe following components emerged from the qualitative analyses: challenging and relaxing activities, activities with acknowledgement by the individual and by the sociocultural context, impact of health condition on activities, involvement in stressful activities and fewer stressing activities, rest and sleep, variety of activities, adaptation of activities according to changed living conditions and activities intended to care for oneself and for others. Based on these, the seven items of the questionnaire (OB-Quest) were developed. 251 people (132 with rheumatoid arthritis, 43 with systematic lupus erythematous and 76 healthy) filled in the OB-Quest. Dimensionality testing indicated multidimensionality of the questionnaire (t = 0.58, and 1.66 after item reduction, non-significant). The item on the component rest and sleep showed differential item functioning (health condition and age). Person separation index was 0.51. Cronbach’s alpha changed from 0.38 to 0.57 after deleting two items.ConclusionsThis questionnaire includes new items addressing components of occupational balance meaningful to patients and healthy people which have not been measured so far. The reduction of two items of the OB-Quest showed improved internal consistency. The multidimensionality of the questionnaire indicates the need for a summary of several components into subscales.

ObjectivesIn Primary Sjögren’s Syndrome (PSS), there is an apparent lack of data concerning the perspectives of patients, their needs, preferences and difficulties of daily life. This qualitative study was conducted to explore perspectives and needs of patients with PSS that influence health related quality of life (HRQL).MethodsWe recruited 20 PSS patients fulfilling the American-European consensus classification criteria out of the PSS cohort of the Medical University Graz, Austria. In total, 6 focus group sessions (with three to four patients per group) were performed. A modified meaning condensation procedure was used to analyse the data.ResultsThe interview analysis resulted in 484 meaning units, 254 subconcepts and 86 concepts. The identified concepts were grouped into three dimensions: physical dimension, psychological & emotional challenges and social life & daily living. A dependency between the three categories was identified.The concepts most commonly reported by patients were related to the physical dimension: pain and dryness as well as complaints associated with/provoked by these symptoms. Patients also reported shortness of breath, fatigue und constipation.ConclusionsThis qualitative study underpins that HRQL in PSS patients is affected by several factors. The problems are not limited to dryness, pain and fatigue while the complaints secondary to these symptoms are important to patients with PSS significantly affecting physical, psychological and social life components of HRQL. A disease-specific patient related outcome measures for clinical practice and trials should be developed considering the different aspects of HRQL in PSS.

Introduction: Occupational balance is an important and widely used concept in occupational therapy and occupational science. There is, however, not one unified definition in use, but several different ones, and thus instruments that measure the concept in research studies are diverse as well. Consequently, it is unclear how instruments and definitions correspond. The purpose of this study was to examine the coverage of occupational balance definitions by occupational balance instruments. Method: Within a mixed-methods design we conducted a qualitative and quantitative content analysis of definitions and items of existing instruments. Definitions and items were extracted from articles identified in a systematic literature search. The extent of congruence and coverage between definitions and instruments was examined. Results: The definitions used in 47 articles were structured into 19 categories. The categories which were found in most definitions were a balance of 'various occupational patterns and areas' (42; 89%) and 'occupational accomplishment, performance, roles and responsibilities' (35; 75%); 20 instruments were explored. Together they covered 16 (84%) of the 19 categories. Conclusion: Knowing which instruments cover which dimensions of occupational balance can support occupational therapists, other health professionals and health researchers in their selection of an instrument to measure occupational balance.

Background and aimsBusy clinical settings often restrict the possibility to focus on concepts that determine health in a positive way, commonly assessed by using patient-reported outcomes (PROs). We aimed to explore which determinants of health (DHs) are important to people with Crohn's disease (CD), to understand possible gender differences and to analyze whether these DHs are covered by PROs used in CD.MethodsTwo systematic literature reviews were done to identify relevant DHs and clinically relevant PROs. We conducted a qualitative narrative biographical study and mapped the patients' experiences to concepts that determine health in a positive way. Experiences, DHs and the items of the PROs were compared by the WHO International Classification of Functioning, Disability and Health (ICF) as a common framework.Results15 people with CD with a median age of 46 years (IQR 34–60) and median disease duration of 15 years (IQR 8–30) participated. Self-efficacy, social support, job satisfaction and occupational balance were mentioned most frequently. While participation appeared to have greater meaning to men, appreciation and resilience seemed to be more important for women. Of 18 PROs the Perceived Stress Questionnaire (PSQ), the Inflammatory Bowel disease — Self-efficacy scale (IBD-SES), the Life Orientation Test — Revised (LOT-R) and the Patient Activation Measure 13 (PAM-13) cover most DHs.ConclusionsThis is the first study elaborating the coverage of patient's perspective by commonly used PROs in CD. The findings could support health professionals to focus on DHs in people with CD in clinical practice and research.

Background Parents’ meaningful activities (occupations) and occupational balance are relevant to neonatal care. Valid and reliable self-reported measurement instruments are needed to assess parents’ occupational balance and to evaluate occupational balance interventions in neonatal care. The aims of this study were to develop a self-reported questionnaire on occupational balance in informal caregivers (OBI-Care) and to examine its measurement properties including construct validity and internal consistency. Methods and findings A mixed method multicenter study design was employed. Items of the OBI-Care were created with parents of preterm infants based on qualitative research methods. Measurement properties were analyzed with quantitative data of parents of preterm infants. Construct validity was assessed by determining dimensionality, overall and item fit to a Rasch model, differential item functioning and threshold ordering. Internal consistency was examined by determining inter-item and item-total correlations, Cronbach’s alpha and Rasch’s person separation index. Fourteen parents participated in item creation. Measurement properties were explored in data of 304 parents. Twenty-two items, summarized in three subscales were compiled to the OBI-Care. Items showed an overall fit and except one item, an item fit to the Rasch model. There was no evidence of differential item functioning and all items displayed ordered thresholds. Each subscale had good values of person separation indices and Cronbach’s alpha. Conclusions The OBI-Care demonstrates construct validity and internal consistency and is thus a suitable measurement instrument to assess occupational balance of parents of preterm infants in neonatal care. OBI-Care is generic and can be applied in various health care settings.

Growing evidence shows interrelations of psychological factors, neurological and immunological processes. Therefore, constructs like a balance of activities, the so called "occupational balance", could also have biological correlates. The aim of this study was to investigate potential associations between occupational balance, functioning, cytokines and C-reactive protein (CRP) in patients suffering from a chronic inflammatory disease like rheumatoid arthritis (RA) and healthy people. Moreover, we wanted to explore potential differences in gender and employment status. A descriptive study in patients with RA and healthy people was conducted using the Occupational Balance-Questionnaire (OB-Quest) and the Short-Form 36 Health Survey (SF-36). Serum levels of cytokines, such as interleukin 6 (IL-6) and 8 (IL-8), interferon alpha (INFα), tumour necrosis factor alpha (TNFα), rheumatoid factor (RF) and of CRP were measured. Descriptive statistics, as well as Mann-Whitney U tests and Spearmen's rank correlation coefficients (rs) were calculated. One-hundred-thirty-two patients with RA and 76 healthy people participated. Occupational balance was associated with functioning, cytokines and CRP. The strongest associations were identified in the unemployed healthy-people sample with cytokines and CRP being within the normal range. For example, the OB-Quest item challenging activities was associated with IL-8 (rs=-0.63, p=0.04) and the SF-36 sub-scale bodily pain was associated with IFNα (rs=-0.69, p=0.02). The items rest and sleep (rs=-0.71, p=0.01) and variety of different activities (rs=-0.74, p<0.01) correlated with the SF-36 sub-scale social functioning. Employed and unemployed people differed in their age and CRP levels. Additionally, gender differences were found in two OB-Quest items in that fewer women were able to adapt their activities to changing living conditions and fewer men were overstressed. In conclusion, we found preliminary biological evidence for the link between occupation and health in that the concepts encompassed in the construct of occupational balance were associated with functioning, cytokines and CRP.

BackgroundPersonal factors (PFs) are internal factors that determine functioning and the individuals’ experience of disability. Their coverage by patient-reported outcome measures (PROMs) has not been examined in rheumatoid arthritis (RA) so far. The aims of this study were to identify PFs important in the life stories of people with RA and to determine their coverage by PROMs used in RA.MethodsThe qualitative data of people with RA was explored to identify PFs. Additionally a systematic literature search was conducted to find PROMs used in RA. PROMs items were linked to the components, domains and categories of the International Classification of Functioning, Disability and Health (ICF) to determine the coverage of important PFs by PROMs.ResultsTwelve PFs were found to be important in the life stories of people with RA. The PFs coping and reflecting about one’s life in an optimistic way were covered most frequently, each by 14 of the 42 explored PROMs, while job satisfaction was not covered at all. The London Coping with Rheumatoid Arthritis Questionnaire, General Self-Efficacy Scale, Arthritis Self-Efficacy Scale, Rheumatoid Arthritis Self-Efficacy Questionnaire and Revised Ways of Coping Inventory covered most PFs. Nineteen PROMs did not cover any of the PFs.ConclusionSeveral PFs were identified as important in the life stories of people with RA, but only 55% of the PROMS covered some of these PFs. When evaluating PFs important to people with RA, health professionals should be alert on which PROMs can be used to assess which PFs.

IntroductionParents have a major impact on the outcome of health care of preterm infants. Parents’ engagement in meaningful activities could have an impact on their own health and wellbeing and therefore be relevant in neonatal intensive care. The aim of this study was to explore meaningful activities of parents of very low birth weight (VLBW) preterm infants with the purpose to further the understanding of their clinical relevance and to foster their consideration in clinical practice and research of neonatal intensive care.MethodsA total of 36 parents of preterm infants born prior to complete 37 weeks of gestation with VLBW (≤1.500 grams) were asked to participate in a focus group interview. Interview transcripts were used to analyse the content of the focus group interviews using meaning condensation method by Steinar Kvale.ResultsThirty-six parents participated in a total of twelve focus groups. Parents reported that the meaning of certain activities changed due to preterm birth. Meaningful activities, like bathing the baby and gardening, could foster a transition from a feeling of parental immaturity to a feeling of maturity, following health care instructions to possessing health care skills, and a functioning-only state to a balance of activities.ConclusionsIn neonatal intensive care, nurses contribute to delivering parental education and thereby facilitate experiences of being a mature parent and of possessing health care skills. Occupational therapy could be used to help re-engage in meaningful activities and maintain a balance of activities in parents of VLBW preterm infants.