Facing and dealing with emotional turbulence: Living with newly diagnosed Parkinson's disease.

INTRODUCTION: The experiences of living with Parkinson's disease (PD) from the perspective of newly diagnosed persons with PD (PwPD) have not been previously described. AIM: This study aimed to gain a better understanding of the impact of living with the early stages of PD. METHODS: A qualitative interview study was conducted among nine persons, seven men and two women, from southern Sweden. Participants had a median age of 71 (min-max, 64-77) years and had been diagnosed with PD for a median of 5 (min-max, 2-12) months. Interviews were recorded and analysed using systematic text condensation. RESULTS: The analysis resulted in one core category, Facing and dealing with emotional turbulence, and four categories with 2-3 subcategories each: Something is wrong (Vague signs of change; Losing control); The going gets tough (Recalling; Lack of motivation); Losing direction (Uncertainties; Frightened of disease progression) and Dealing with life (Avoiding social situations; Hope and despair; Ease worries). CONCLUSION: Newly diagnosed PwPD face emotional turbulence with increasing challenges in managing everyday basic needs. Impaired functioning affects self-esteem and identity, which calls for strategies to overcome emotional reactions of embarrassment, frustration and worry. A sense of lost control and direction increased as the future became more uncertain. The participants' emotional burden and struggle to find a reason to go on or some solution to their new situation left them with both hope and despair. Our results suggest that a person-centred needs-based approach may help newly diagnosed PwPD deal with their new life situation.

Evaluating person-centered care in neurological outpatient care: a mixed-methods content validity study.

BACKGROUND: Person-centered care (PCC) is gaining increased attention. PCC concerns the whole person behind the disease and can improve care for people with long-term conditions such as multiple sclerosis (MS) and Parkinson's disease (PD). However, there is a lack of tools to assess PCC from the patients' perspective, particularly in outpatient care. The Person-Centered Care instrument for outpatient care (PCCoc) is an instrument under development with the intention to fill this gap. The aim of this study was to test the user-friendliness and content validity of the PCCoc as experienced by persons with MS and PD in neurological outpatient care. METHODS: Twenty persons with MS or PD completed the 35-item PCCoc followed by an interview regarding the instrument's intelligibility and ease of use to assess its user-friendliness. Participants then rated the relevance of each item. These ratings were used to calculate the content validity index (CVI) for individual items (I-CVI) and for the overall scale (S-CVI). RESULTS: It took a median of 5 min for participants to complete the PCCoc. Instrument instructions were found clear, items easy to understand, and response categories distinct. No important missing areas were reported. I-CVI values ranged between 0.75 and 1, and S-CVI was 0.96. CONCLUSIONS: We found support for the user-friendliness and content validity of the PCCoc among persons with MS and PD, suggesting that the PCCoc can be useful for evaluating and developing PCC in neurological outpatient care. Further testing in broader contexts, including psychometric testing, is warranted to establish its usefulness.

Forward and Backward Recalling Sequences in Spatial and Verbal Memory Tasks: What Do We Measure?

There are different views in the literature about the number and inter-relationships of cognitive domains (such as memory and executive function) and a lack of understanding of the cognitive processes underlying these domains. In previous publications, we demonstrated a methodology for formulating and testing cognitive constructs for visuo-spatial and verbal recall tasks, particularly for working memory task difficulty where entropy is found to play a major role. In the present paper, we applied those insights to a new set of such memory tasks, namely, backward recalling block tapping and digit sequences. Once again, we saw clear and strong entropy-based construct specification equations (CSEs) for task difficulty. In fact, the entropy contributions in the CSEs for the different tasks were of similar magnitudes (within the measurement uncertainties), which may indicate a shared factor in what is being measured with both forward and backward sequences, as well as visuo-spatial and verbal memory recalling tasks more generally. On the other hand, the analyses of dimensionality and the larger measurement uncertainties in the CSEs for the backward sequences suggest that caution is needed when attempting to unify a single unidimensional construct based on forward and backward sequences with visuo-spatial and verbal memory tasks.

Transformation of Rasch model logits for enhanced interpretability.

BACKGROUND: The Rasch model allows for linear measurement based on ordinal item responses from rating scales commonly used to assess health outcomes. Such linear measures may be inconvenient since they are expressed as log-odds units (logits) that differ from scores that users may be familiar with. It can therefore be desirable to transform logits into more user-friendly ranges that preserve their linear properties. In addition to user-defined ranges, three general transformations have been described in the literature: the least measurable difference (LMD), the standard error of measurement (SEM) and the least significant difference (LSD). The LMD represents the smallest possible meaningful unit, SEM relates the transformed scale values to measurement uncertainty (one unit on the transformed scale represents roughly one standard error), and LSD represents a lower bound for how coarse the transformed scale can be without loss of valid information. However, while logit transformations are relatively common in the health sciences, use of LMD, SEM and LSD transformations appear to be uncommon despite their potential role. METHODS: Logit transformations were empirically illustrated based on 1053 responses to the Epworth Sleepiness Scale. Logit measures were transformed according to the LMD, SEM and LSD, and into 0-10, 0-100, and the original raw score (0-24) ranges. These transformations were conducted using a freely available Excel tool, developed by the authors, that transforms logits into user-defined ranges along with the LMD, SEM and LSD transformations. RESULTS: Resulting LMD, SEM and LSD transformations ranged 0-34, 0-17 and 0-12, respectively. When considering these relative to the three user-defined ranges, it is seen that the 0-10 range is narrower than the LSD range (i.e., loss of valid information), and a 0-100 range gives the impression of better precision than there is, since it is considerably wider than the LMD range. However, the 0-24 transformation appears reasonable since it is wider than the LSD, but narrower than the LMD ranges. CONCLUSIONS: It is suggested that LMD, SEM and LSD transformations are valuable for benchmarking in deciding appropriate ranges when transforming logit measures. This process can be aided by the Excel tool presented and illustrated in this paper.

Novel insights regarding the measurement properties of the SCOPA-AUT.

BACKGROUND: The Scale for Outcomes in Parkinson's disease for Autonomic symptoms (SCOPA-AUT) is an instrument intended to assess overall and domain-specific autonomic symptom burden. In this study the SCOPA-AUT is translated into Swedish and its measurement properties are assessed. METHODS: Following translation the SCOPA-AUT was field-tested regarding comprehensibility, relevance, and respondent burden (n = 20). It was then tested according to Rasch measurement theory using data from 242 persons with PD, of whom 162 completed SCOPA-AUT at baseline and 1-2 years later, giving a total of 404 data points for analysis. RESULTS: The Swedish SCOPA-AUT took a mean of 6 min to complete and was considered easy to use and relevant by respondents. SCOPA-AUT exhibited acceptable Rasch model fit, represents more severe levels of dysautonomia than that reported by the sample, and response categories were not working as expected for 17 items. Local dependency was identified and followed a pattern resembling the suggested subscales. Accounting for the subscale structure eliminated local dependency and reduced the initially inflated reliability from 0.81 to 0.68. CONCLUSIONS: The SCOPA-AUT is useful as a clinical check-list but requires further developmental work in order to meet more rigorous standards as an outcome measurement instrument.

Effects of self-management education for persons with Parkinson's disease and their care partners: A qualitative observational study in clinical care.

Persons with Parkinson's disease and their care partners want support from health care to develop the skills to handle everyday life with the long-term condition. Earlier findings indicate that participants of the self-management program Swedish National Parkinson School experience several benefits of the program. The purpose of this qualitative observational study was to explore if participants had implemented the strategies of self-monitoring included in the program and use them to communicate health care status and needs in clinical encounters. Data were collected 3 to 15 months after participation in the program and analyzed using constant comparative analysis. Three categories were evident: "Self-observation in everyday life," "Self-care activities to promote health," and "Managing emotional impact of Parkinson's Disease." Categories were linked together in a core category that highlight the use of self-management strategies described by participants during clinical encounters. Results confirmed that persons with Parkinson's disease and care partners use the techniques of self-observation in their everyday lives. Observations of effects in clinical care can be a valuable approach to evaluate the outcomes educational interventions and their benefits for individuals and health care.

Association Between Sleep Duration, Obesity, and School Failure Among Adolescents.

The aim of this study was to investigate the association between sleep duration, overweight/obesity, and school failure using data obtained from self-reported questionnaires completed by 13- to 15-year-olds in Sweden (n = 1,363; 50.7% female). The height and weight of the participants were measured by school nurses. A multiple logistic regression analysis was used to analyze the association between sleep duration and overweight/obesity, school failure, and perceived economic situation. A short sleep duration (<7 hr) was associated with overweight/obesity (p = .001), school failure (p = .007), and poorer perceived economic situation (p = .004). Modifying the sleep habits of adolescents is a potential target for obesity intervention as well as for improving school success. This information is particularly well suited for school nurses to disseminate to students and their parents.

Improving self-management for persons with Parkinson's disease through education focusing on management of daily life: Patients' and relatives' experience of the Swedish National Parkinson School.

AIMS AND OBJECTIVE: To identify and describe experiences valuable for managing daily life after participation in the NPS self-management intervention. The second part was to explore the applicability of the Self- and family management framework by Grey and colleagues for persons with Parkinson's Disease and their relatives. BACKGROUND: The impact of PD is evident on the lives of both patients and relatives. The National Parkinson School (NPS) is a Swedish self-management programme designed for patients and relatives, aiming at teaching strategies helpful for the ability of self-management, in order to promote life satisfaction. DESIGN: Qualitative explorative with inductive and deductive analysis. METHODS: Five group discussions with NPS participants were audio-recorded. Verbatim transcriptions were analysed inductively with thematic analysis according to Braun and Clarke, and the findings were then applied deductively to the existing model for patients with chronic disease. RESULTS: Through the first step of inductive analysis, three themes capturing the meaning, value and experience of being a participant at the NPS were identified: exchanging experiences and feeling support, adjustment and acceptance of PD for managing daily life and promoting life satisfaction. The deductive analysis applied the inductive findings to the Self- and family management framework of chronically ill to explore the fit to persons with PD and relatives attending the NPS programme. CONCLUSIONS: The NPS programme is a promising approach for helping persons with PD and their relatives to achieve better self-management of disease and improved life satisfaction. Further evaluations of programme outcomes in clinical practice are warranted. RELEVANCE OF CLINICAL PRACTICE: Self-management programmes like the NPS is a promising approach in facilitating a positive mindset and outlook on life and gain knowledge to understand, adapt and handle chronic disease, such as PD, better.

Computer-Based Training in Eating and Nutrition Facilitates Person-Centered Hospital Care: A Group Concept Mapping Study.

Studies have shown that computer-based training in eating and nutrition for hospital nursing staff increased the likelihood that patients at risk of undernutrition would receive nutritional interventions. This article seeks to provide understanding from the perspective of nursing staff of conceptually important areas for computer-based nutritional training, and their relative importance to nutritional care, following completion of the training. Group concept mapping, an integrated qualitative and quantitative methodology, was used to conceptualize important factors relating to the training experiences through four focus groups (n = 43), statement sorting (n = 38), and importance rating (n = 32), followed by multidimensional scaling and cluster analysis. Sorting of 38 statements yielded four clusters. These clusters (number of statements) were as follows: personal competence and development (10), practice close care development (10), patient safety (9), and awareness about the nutrition care process (9). First and second clusters represented "the learning organization," and third and fourth represented "quality improvement." These findings provide a conceptual basis for understanding the importance of training in eating and nutrition, which contributes to a learning organization and quality improvement, and can be linked to and facilitates person-centered nutritional care and patient safety.

Measuring the Impact of Caring for a Spouse with Alzheimer's Disease: Validation of the Alzheimer's Patient Partners Life Impact Questionnaire (APPLIQue).

Alzheimer's disease (AD) is the most common form of dementia, characterized by cognitive, psychiatric and behavioral symptoms and increasing dependency. Family members typically assume increasing caregiving responsibilities, with considerable quality of life (QoL) impact. This article describes the testing of a needs-based QoL questionnaire for AD family caregivers. Initial analyses, according to Rasch measurement theory, suggested that items applied to spousal rather than non-spousal caregivers. Following removal of non-spousal responders, a 25-item questionnaire was identified that exhibited acceptable model fit, a mean (SD) person location of 0.194 (1.42) logits, residual correlations 0.173 and absence of DIF by age, gender or administration. Reliability was 0.85. This new measure, the Alzheimer's Patient Partners Life Impact Questionnaire (APPLIQue), may fill an important gap in assessing the impact of AD on spousal caregivers and outcomes of interventions aimed at caregivers as well as persons with AD.

Evaluation of Self-management Program Outcomes: Adaptation and Testing of a Swedish Version of the Health Education Impact Questionnaire (heiQ).

Self-management programs require a range of indicators to evaluate their outcomes. The Health Education Impact Questionnaire (heiQ) was developed to meet this need. The heiQ contains 40 items with 4 response categories, representing eight scales. We developed a Swedish version of the heiQ that was tested by cognitive interviews (n = 15) and psychometrically (n = 177) using classical test theory (CTT) and Rasch measurement theory (RMT). The Swedish heiQ was easily understood by interviewees and met CTT criteria, with supported scaling assumptions (corrected item-total correlations, 0.37) and reliability (ordinal alpha 0.78). General support was demonstrated for the measurement properties of the eight heiQ scales by acceptable RMT fit. However, there were signs of malfunctioning response categories for four items in two scales, and of suboptimal item coverage of the measurement continua. The Swedish heiQ appears comparable to other available language versions. Further efforts may be needed to optimize response categories and measurement precision.

Psychometric analysis of the Salutogenic Health Indicator Scale (SHIS) in adolescents.

AIM: The aim of this study was to test the psychometric properties of the Salutogenic Health Indicator Scale (SHIS) in an adolescent population. METHODS: The investigation was performed among Swedish students aged 13-15 years ( n = 817; 58% girls). The SHIS was assessed for respondent acceptability, and its psychometric properties were evaluated according to classical test theory (regarding unidimensionality, targeting, reliability, and external construct validity). RESULTS: The adolescents found it easy to complete the questionnaire, which was completed in an average of 4 minutes. Exploratory factor analysis, which is based on polychoric correlations, identified one factor, supporting the instrument's unidimensionality. Floor/ceiling effects were ⩽ 3.3%. Reliability estimates yielded a Cronbach's alpha value of 0.93; the test-retest reliability ( n = 50; 2-week interval) coefficients were 0.89 for the total SHIS score and 0.52-0.79 for item scores. Spearman correlations with other variables were based on a priori expectations (self-rated general health, 0.595; depressive symptoms, -0.773; anxiety, -0.577; and sleep problems, 0.519). CONCLUSIONS: Our observations support both the acceptability and the psychometric properties of the SHIS as a brief, unidimensional assessment tool for salutogenic health in adolescents. Further studies using modern test theory are needed to better understand the measurement properties of the SHIS, including the functioning of its response categories and its comparability between adolescents and adults.

Beware of the origin of numbers: Standard scoring of the SF-12 and SF-36 summary measures distorts measurement and score interpretations.

The 12-item Short Form Health Survey (SF-12) is a generic health rating scale developed to reproduce the Physical and Mental Component Summary scores (PCS and MCS, respectively) of a longer survey, the SF-36. The standard PCS/MCS scoring algorithm has been criticized because its expected dimensionality often lacks empirical support, scoring is based on the assumption that physical and mental health are uncorrelated, and because scores on physical health items influence MCS scores, and vice versa. In this paper, we review the standard PCS/MCS scoring algorithm for the SF-12 and consider alternative scoring procedures: the RAND-12 Health Status Inventory (HSI) and raw sum scores. We corroborate that the SF-12 reproduces SF-36 scores but also inherits its problems. In simulations, good physical health scores reduce mental health scores, and vice versa. This may explain results of clinical studies in which, for example, poor physical health scores result in good MCS scores despite compromised mental health. When applied to empirical data from people with Parkinson's disease (PD) and stroke, standard SF-12 scores suggest a weak correlation between physical and mental health (rs .16), whereas RAND-12 HSI and raw sum scores show a much stronger correlation (rs .67-.68). Furthermore, standard PCS scores yield a different statistical conclusion regarding the association between physical health and age than do RAND-12 HSI and raw sum scores. We recommend that the standard SF-12 scoring algorithm be abandoned in favor of alternatives that provide more valid representations of physical and mental health, of which raw sum scores appear the simplest.

Living with persistent rheumatoid arthritis: a BARFOT study.

AIM AND OBJECTIVE: To describe and understand the meaning of living with persistent rheumatoid arthritis. BACKGROUND: A considerable number of patients with rheumatoid arthritis live with an ongoing active and symptomatic illness despite access to potent antirheumatic treatment. There is, however, a lack of knowledge about the meaning of living with this severe long-term illness, defined as persistent rheumatoid arthritis. DESIGN: A descriptive design based on a hermeneutic phenomenological method was used. METHODS: Ten adults with persistent rheumatoid arthritis and at least five years disease duration were interviewed. The interviews were analysed according to van Manen's method. RESULTS: Living with persistent rheumatoid arthritis revealed four overall themes: an existence dominated by painful symptoms and treatment, radical changes and limitations in one's life, a continual struggle to cope with one's life and to master the illness, and a dependency on those who are close by and the world around. The lifeworld was affected to a varying extent and in various ways by the illness but also by the dependence on its treatment and care that was not experienced as sufficiently meeting needs in terms of security, access to and coordination of care as well as team and rehabilitation services. CONCLUSIONS: Persistent rheumatoid arthritis and its treatment entail a radical effect on the person's life and quality of life. Current ordinary rheumatology care does not seem to meet the individual needs of the person with persistent rheumatoid arthritis in an optimal way. RELEVANCE TO CLINICAL PRACTICE: A greater knowledge about and understanding of the person who lives with persistent rheumatoid arthritis is important for facilitating the development of care and the relief of suffering. A holistic alternative to conventional clinical practice, such as person-centred care, could be tested as an innovative model of care. Our findings might serve as material for educational and counselling purposes for healthcare professionals.

Psychometric testing of a Swedish version of the Apathy Evaluation Scale.

BACKGROUND: Apathy, a prevalent and clinically relevant symptom in neurodegenerative disease, is often evaluated by the instrument Apathy Evaluation Scale (AES). However, this instrument has not been translated into Swedish, halting clinical and research efforts. Furthermore, previous studies lack analyses of some basic properties, such as the legitimacy of a total score, or have analysed dimensionality by questionable methods. AIM: To translate and psychometrically evaluate a Swedish version of the AES. METHOD: The AES was translated, and its psychometric properties were tested in the Swedish BioFINDER study, including cognitively well elderly, and subjects with mild cognitive or parkinsonian symptoms. Psychometric analyses were conducted according to classical test theory (CTT) and aimed to resemble those performed in the English original study by Marin et al. in 1991. Dimensionality was additionally analysed on a matrix of polychoric correlations and parallel analyses. RESULTS: Data indicate that the Swedish AES performs satisfactorily regarding data completeness, scaling assumptions, targeting, and reliability. Principal component analyses (with parallel analysis) of polychoric correlation matrices identified a single component. Convergent and discriminative validity correlations accorded with a priori expectations. CONCLUSIONS: The study provides initial support that this Swedish AES performs similarly to the English original, and exhibits acceptable psychometric properties according to CTT, including supported unidimensionality, and may be adopted for use in clinical and research settings.

Weight stability in Parkinson's disease.

OBJECTIVES: Parkinson's disease (PD) has traditionally been associated with weight loss. However, recent studies have not found any evidence of underweight in PD. Nevertheless, few studies have addressed nutritional status changes over time in relation to other clinical PD features. Here, we explore changes in nutritional status and motor and non-motor PD features (including dopaminergic drug therapy) in PD patients after 1 year. METHODS: Motor and non-motor PD features, dopaminergic drug therapy, under-nutrition and malnutrition risk, and anthropometric measures (BMI, handgrip strength, triceps skin-fold, mid-arm circumference, and mid-upper arm muscle circumference) were assessed at baseline and 1 year later among 65 people with PD. RESULTS: Disability, PD motor symptoms, dysautonomia, and dopaminergic drug therapy increased. Underweight was uncommon both at baseline (n = 3) and follow-up (n = 2); malnutrition risk was common but stable (88 and 92%), whereas triceps skin-fold increased (P = 0.030); mid-upper arm muscle circumference decreased (P = 0.002); and the proportion of people with low handgrip strength (P = 0.012) increased. Correlations between nutritional variables and motor and non-motor PD features were absent to modest. Multiple linear regression analysis showed that baseline pupillomotor functioning was associated with decreased weight and BMI, and sleep with increased weight and BMI. In addition, increases in anxiety were associated with decreased weight, BMI, and triceps skin-fold. DISCUSSION: During the PD course, there seems to be redistribution in body composition from muscle to fat. Studies are needed to identify possible explanations for the findings. This implies that malnutrition should be regularly screened to identify those at risk of developing reduced muscle mass and increased morbidity.

The Swedish SCOPA-SLEEP for assessment of sleep disorders in Parkinson's disease and healthy controls.

PURPOSE: SCOPA-SLEEP is a rating scale for night-time sleep and daytime sleepiness (DS) proposed for use among people with Parkinson's disease (PD) as well as others. We translated it into Swedish and assessed its psychometric properties in PD and age-matched healthy controls. METHODS: Following translation according to the dual-panel approach, the Swedish SCOPA-SLEEP was field-tested regarding comprehensibility, relevance and respondent burden (n = 20). It was then psychometrically tested according to classical test theory (data completeness, scaling assumptions, targeting, reliability and construct validity) using data from 149 people with PD and 53 age-matched healthy controls from the prospective Swedish BioFINDER study. RESULTS: SCOPA-SLEEP took a mean of 3.5 min to complete and was considered easy to use and relevant. Missing item responses were <8 %, corrected item-total correlations were ≥0.47 (except for one DS item among controls), factor analyses suggested one dimension per scale, floor/ceiling effects were ≤17 %, reliability was ≥0.85 except for the DS scale among controls (0.65) and construct validity was supported. CONCLUSIONS: Observations concur with previous evaluations, thus providing initial support for the Swedish SCOPA-SLEEP among people with PD. Further studies are needed to establish its generic properties and to understand its measurement properties in better detail.

Fall Risk and Its Associated Factors among Older Adults without Home-Help Services in a Swedish Municipality.

During preventive home visits, the purpose of this study was to identify the prevalence of fall risk and any associated factors. Participants (n = 1471) were cognitively sound community-dwelling older adults (≥ 70 years) without home-help service, living in a Swedish municipality. The Downton Fall Risk Index and nine single items were used. Tiredness/fatigue, age ≥ 80, inability to walk 1 hr, inability to climb stairs and worrying were significantly associated with fall risk. Preventive home visits incorporating fall-risk screening proved valuable, providing information for interventions aimed at preventing falls, maintaining independence, and facilitating health among community dwelling participants.

Sample Size and Statistical Conclusions from Tests of Fit to the Rasch Model According to the Rasch Unidimensional Measurement Model (Rumm) Program in Health Outcome Measurement.

Sample size is a major factor in statistical null hypothesis testing, which is the basis for many approaches to testing Rasch model fit. Few sample size recommendations for testing fit to the Rasch model concern the Rasch Unidimensional Measurement Models (RUMM) software, which features chi-square and ANOVA/F-ratio based fit statistics, including Bonferroni and algebraic sample size adjustments. This paper explores the occurrence of Type I errors with RUMM fit statistics, and the effects of algebraic sample size adjustments. Data with simulated Rasch model fitting 25-item dichotomous scales and sample sizes ranging from N = 50 to N = 2500 were analysed with and without algebraically adjusted sample sizes. Results suggest the occurrence of Type I errors with N less then or equal to 500, and that Bonferroni correction as well as downward algebraic sample size adjustment are useful to avoid such errors, whereas upward adjustment of smaller samples falsely signal misfit. Our observations suggest that sample sizes around N = 250 to N = 500 may provide a good balance for the statistical interpretation of the RUMM fit statistics studied here with respect to Type I errors and under the assumption of Rasch model fit within the examined frame of reference (i.e., about 25 item parameters well targeted to the sample).

Nutritional screening: a user-friendly tool adapted from Sweden.

Screening for undernutrition is highly important and may reduce morbidity and mortality. The Minimal Eating Observation and Nutrition Form Version II (MEONF-II) is a nutritional screening tool specifically developed for use by nurses. The authors describe the translation, performance and appropriateness of MEONF-II for the UK. Following translation from Swedish to British English, the user-friendliness and appropriateness of the British MEONF-II was tested by 29 registered nurses and final-year student nurses on 266 hospital inpatients. The new British MEONF-II was perceived as highly user-friendly and appropriate. Assessors found MEONF-II to compare favourably with other similar tools in terms of preference, usefulness and helpfulness in providing good nutritional care. Dependency in activities and poorer subjective health were associated with a higher risk of undernutrition. These findings support the appropriateness of the British MEONF-II version and suggest it may act as a user-friendly facilitator for good nutritional nursing care.