Validity and Reliability of the Swedish Version of the Gugging Swallowing Screen for use in Acute Stroke Care.

The purpose of this study was to cross-culturally validate the Swedish version of the Gugging Swallowing Screen (GUSS-S) for use in the acute phase of stroke. Further, to evaluate the inter-rater reliability between different healthcare professionals. GUSS was translated into Swedish using a forward-backward method followed by expert rating to obtain content validity. For criterion validity, the GUSS-S score was compared with Flexible Endoscopic Evaluation of Swallowing (FEES) assessed with the Penetration-Aspiration Scale (PAS) in acute stroke patients (≤ 96 h after stroke onset). Convergent validity was calculated by comparison with the Functional Oral Intake Scale (FOIS) as per the comprehensive FEES assessment, the Standardized Swallowing Assessment (SSA), and the National Institutes of Health Stroke Scale (NIHSS). To evaluate inter-rater reliability, a nurse and a speech-language pathologist (SLP) independently assessed 30 patients. In total, 80 patients (32 women, median age 77 years (range 29-93) were included, mean 1.7 ± 0.9 days after admission. With a cut-off value of 14 points, the GUSS-S identified aspiration with a sensitivity of 100% and a specificity of 73% (area under the curve: 0.87, 95% CI 0.78-0.95). Spearman rank correlation showed very strong correlation between the GUSS-S and PAS (rs=-0.718, P = < 0.001) and FOIS (rs=0.720, P = 0.001) and strong correlation between the GUSS-S and SSA (rs=0.545, P = < 0.001) and NIHSS (rs=-0.447, P = 0.001). The inter-rater agreement for GUSS-S was substantial (Kw=0.67, P = < 0.001). The results indicate that the GUSS-S is a valid and reliable tool for the assessment of dysphagia in acute stroke patients by different healthcare professionals.

Swedish translation and cultural adaptation of the scored Patient-Generated Subjective Global Assessment (PG-SGA©)-A validated tool for screening and assessing malnutrition in clinical practice and research.

INTRODUCTION: The scored Patient-Generated Subjective Global Assessment (PG-SGA©) is a validated tool for the screening, assessment and monitoring of malnutrition, and triaging of interventions. It contains a patient-generated component and a healthcare professional (HCP)-generated component. AIM: To translate the PG-SGA into Swedish, assess the linguistic and content validity of the Swedish version, and ensure conceptional, semantic and operational equivalence to the original English PG-SGA. METHODS: In line with the methodology used in previously translated and culturally adapted versions, the standardised 10-step process suggested by the International Society for Health Economics and Outcomes Research (ISPOR) was followed. In step 7, a cross-sectional study targeting patients n = 51 and HCPs n = 52 was performed at a university hospital in Sweden. Using separate questionnaires, patients assessed the patient component and HCPs, the professional component regarding perceived comprehensibility and difficulty (linguistic validity). The HCPs also assessed perceived relevance (content validity) of all items on the PG-SGA. Item indices for comprehensibility (I-CI), difficulty (I-DI) and content validity (I-CVI) were calculated and averaged into scale indices (S-CI, S-DI and S-CVI). Cut-off standards for item and scale indices were used as reference. RESULTS: The Swedish version of the PG-SGA rated excellent for comprehensibility (S-CI 0.96) and difficulty (S-DI 0.93) for the patient component. The professional component rated acceptable for comprehensibility (S-CI 0.89) and below acceptable for difficulty (S-DI 0.70), with the physical examination rated most difficult (I-DI 0.39 to 0.69). Content validity for the full Swedish PG-SGA was rated excellent (S-CVI 0.94). CONCLUSION: The patient component was considered clear and easy to complete. The full Swedish PG-SGA was considered relevant by HCPs for screening and assessment of malnutrition. Due to perceived difficulty with the physical examination, training of Swedish HCPs in using the PG-SGA is essential before implementing the professional component into clinical practice or research.

Nutrition intervention goals from the perspectives of patients at risk of malnutrition: A qualitative study.

BACKGROUND: Nutrition counselling is characterised by a collaborative approach where the patient and the dietitian establish goals that promote health and self-management. Little is known about goal-setting in nutrition interventions of patients at risk of malnutrition. The present study aims to describe the perspectives and needs of patients at risk of malnutrition regarding goals of nutrition interventions. METHODS: Semi-structured interviews were conducted with 15 patients from three primary care centres and one hospital in mid-Sweden selected through purposive sampling. Interview transcripts were analysed using reflexive thematic analysis following the six-phase guidelines of Braun and Clarke to identify patterns of shared meaning and themes in the data. RESULTS: The findings highlight that the participants rarely reflected on their personal goals of the nutrition intervention. Instead, they strived to maintain strength and energy, with the nutrition counselling being seen as supportive in managing nutrition impact symptoms. They described discrepancies between their perspectives and the dietitian's regarding weight goals and the diet prescribed to gain weight. CONCLUSIONS: The study findings suggest that elucidating patients' goals is key to counteracting the discrepancies between the dietitians' clinically oriented goals and patients' perspectives. Goal-setting is part of the dietitian's structured working process, whereas the patient's lifeworld is complex and unstructured. To provide person-centred nutrition care, new strategies and tools are needed to facilitate collaborative goal-setting. These approaches will bridge the gap between clinical goals and patients' individual needs, promoting better alignment and improved outcomes.

How Valid and Reliable Is the International Dysphagia Diet Standardisation Initiative (IDDSI) When Translated into Another Language?

Swallowing difficulties are estimated to affect 590 million people worldwide and the modification of food and fluids is considered the cornerstone of dysphagia management. Contemporary practice uses the International Dysphagia Diet Standardisation Initiative (IDDSI), however, the validity and reliability of IDDSI when translated into another language has not been investigated. This study describes the translation process and confirms the validity and reliability of IDDSI when translated into another language (Swedish). The translation used a 12-step process based on the World Health Organization recommendations. Validity was tested using Content Validity Index (CVI) based on three ratings by a panel of 10-12 experts (Dietitians and Speech-Language Pathologists [SLPs]). The translation was rated for linguistic correlation as well as understandability and applicability in a Swedish context. Inter-rater reliability was calculated using Intraclass Correlation Coefficient (ICC) from 20 SLP assessments of 10 previously published patient cases. Significant improvement (p < 0.05) of CVI between Expert Panel assessments was shown for linguistic correlation (improvement from 0.74-0.98) and understandability/applicability (improvement from 0.79-0.93 across ratings). Excellent validity (Item-CVI > 0.78 and Scale-CVI/Average > 0.8) and very high inter-rater reliability (ICC > 0.9) were demonstrated. Results show that, when using a multi-step translation process, a translated version of IDDSI (into Swedish) demonstrates high validity and reliability. This further contributes to the evidence for use of IDDSI.

Setting goals with patients at risk of malnutrition: A focus group study with clinical dietitians.

OBJECTIVE: Setting goals collaboratively with patients is a key aspect in shared decision-making (SDM) in malnutrition interventions. The aim, therefore, was to gain an understanding of clinical dietitians' reflections regarding the process of goal-setting with patients at risk of malnutrition. METHODS: Six semi-structured audio-recorded focus group discussions were held with registered dietitians (n = 29) from primary healthcare and hospitals in Sweden. Focus group transcripts were analysed thematically to find patterns in the data and identify themes. RESULTS: Dietitians expressed striving to explore patients' narratives, capabilities, and resources before deciding on goals. They described different strategies in counseling patients and a lack of patient participation in the goal-setting. They emphasized the difficulties of setting feasible goals due to discrepancies between their clinically-oriented goals and patients' personal goals. CONCLUSION: Findings highlight a gap in the process of setting goals for patients at risk of malnutrition, where patients' participation was lacking. Education in SDM, and strategies and tools to support dietitians in involving patients in goal-setting, are required to bridge the gap and promote person-centeredness. PRACTICE IMPLICATIONS: Findings may be further used to develop tools and strategies, and design studies on the implementation of and education in SDM and goal-setting for malnutrition interventions.

Discrepancy in the evaluation of explicit and implicit nutrition care outcomes for patients at risk of malnutrition: A qualitative study.

BACKGROUND: Nutrition care plays a significant role in the prevention and treatment of malnutrition, although the challenge to establish the precise impact of a nutrition intervention on patient outcomes remains. Malnutrition can be associated with diverse underlying diseases and an increased risk of complications, which increases the difficulty of monitoring and evaluating the nutrition intervention. The aim is to gain an understanding of dietitians' reflections concerning nutrition care outcomes of interventions in patients at risk of malnutrition. METHODS: Six semi-structured audio-recorded focus group discussions with registered dietitians from primary healthcare and hospitals (n = 29) in Sweden were held at the dietitians' place of work or at the University. Focus group transcripts were analysed thematically to reveal patterns in the data and identify themes and subthemes. RESULTS: The dietitians described an approach to nutrition monitoring and evaluation of patients at risk of malnutrition that was categorised into three themes: (i) quantitative explicit outcomes, based on objective measures and described as rigorous; (ii) quantitative estimated outcomes, based on estimates and described as less rigorous and (iii) qualitative implicit outcomes, based on patients' subjective perceptions and experiences of their health and described as difficult to measure. CONCLUSIONS: Findings indicate the need for new strategies to promote systematic and comprehensive nutrition monitoring and evaluation.

Caring Behaviors Inventory-24: translation, cross-cultural adaptation and psychometric testing for use in a Swedish context.

BACKGROUND: Patients' health and wellbeing are promoted when nurses successfully conceptualize caring in clinical practice. Measuring caring behaviors can advance knowledge about caring and has potential to improve caring practices and the outcomes of care. The Caring Behaviors Inventory-24 (CBI-24) is an empirical instrument for measuring caring, developed to determine perceptions of caring among patients and nurses. Since the instrument was not available in Swedish, the aim of this study was therefore to translate into Swedish and cross-culturally adapt CBI-24 for a Swedish healthcare context, and to psychometrically analyze the Swedish version of CBI-24. METHODS: The study used a traditional forward and back translation process in six stages: (1) two simultaneous translations by bilingual experts; (2) expert review committee synthesis; (3) blind back translation; (4) expert review committee deliberations; (5) pre-testing with cognitive interviews, and (6) psychometric evaluations. RESULTS: The translation process was systematically conducted and entailed discussions regarding semantic, idiomatic, experiential and conceptual equivalence. The cognitive interviews generated thoughts and reflections, which resulted in adjusting three items of the CBI-24 SWE. For psychometric analyses, 234 persons answered the questionnaire. Results indicated acceptable overall model fit in the χ2-value for the confirmatory factor analysis, while for the heuristic goodness-of-fit indices, the comparative fit index (CFI) and the standardized mean square residual (SMSR) indicated good model fits, and the root mean square error approximation (RMSEA) indicated an acceptable fit. CONCLUSIONS: CBI-24 SWE has been shown to be a psychometrically acceptable instrument for use in Swedish research contexts. Further studies regarding the clinical usefulness of the instrument may be in order. In particular, CBI-24 SWE should be evaluated among nurses in rural areas.

Translation, Cross-Cultural Adaptation, and Psychometric Analysis of the Attitudes Towards Homelessness Inventory for Use in Sweden.

BACKGROUND: Homelessness is an increasing problem worldwide, and the origins of homelessness in high-income countries are multifaceted. Due to stigma and discrimination, persons in homelessness delay seeking health care, resulting in avoidable illness and death. The Attitudes Towards Homelessness Inventory (ATHI) was developed to cover multiple dimensions of attitudes toward persons in homelessness and to detect changes in multiple segments of populations. It has, however, not previously been translated to Swedish. AIMS: The aim of the present study was to translate, cross-culturally adapt, and psychometrically test the ATHI for use in a Swedish healthcare context. METHODS: The project used a traditional forward- and back-translation process in six stages: (1) two simultaneous translations by bilingual experts; (2) expert review committee synthesis; (3) blind back-translation; (4) expert review committee deliberations; (5) pre-testing with cognitive interviews including registered nurses (n = 5), nursing students (n = 5), and women in homelessness (n = 5); and (6) psychometric evaluations. The final ATHI questionnaire was answered by 228 registered nurses and nursing students in the year 2019. RESULTS: The translation process was systematically conducted and entailed discussions regarding semantic, idiomatic, experiential, and conceptual equivalence. Confirmatory factor analysis was used to examine if the collected data fitted the hypothesized four-factor structure of the ATHI. Overall, it was found that the model had an acceptable fit and that the Swedish version of ATHI may be used in a Swedish healthcare context. LINKING EVIDENCE TO ACTION: The ATHI has been shown to be a psychometrically acceptable research instrument for use in a Swedish healthcare context. The systematic and rigorous process applied in this study, including experts with diverse competencies in translation proceedings and testing, improved the reliability and validity of the final Swedish version of the ATHI. The instrument may be used to investigate attitudes toward women in homelessness among nursing students and RNs in Sweden.

A longitudinal study of changing characteristics of self-reported taste and smell alterations in patients treated for lung cancer.

PURPOSE: Taste and smell alterations (TSAs) are common symptoms in patients with cancer that may interfere with nutritional intake and quality of life. In this study, we explore and describe how characteristics of self-reported TSAs change in individuals with lung cancer over time using a multiple case study approach to present longitudinal data from individuals. METHODS: Patients under investigation for lung cancer were recruited from one university hospital in Sweden. The 52 patients providing data eligible for the analyses presented here were those treated for primary lung cancer with three measurement time-points, of which one was prior to treatment and two after treatment start. Four self-report instruments were used for data collection. These included the Taste and Smell Survey, used to characterize TSAs for each individual at the three time-points and instruments measuring nutritional status, symptom burden and well-being. Three patient cases are described in detail to illustrate variation in individual experiences of TSAs. RESULTS: The characteristics of the TSAs experienced changed over time for many of the individuals in this study, including those undergoing surgery or stereotactic radiotherapy. The case descriptions show how the individual experiences of TSAs and the impact on daily life of these symptoms not only depend on TSA characteristics, but may be influenced by contextual factors, e.g. other symptoms and life situation. CONCLUSIONS: Our results suggest that healthcare professionals need to consider the variation in characteristics of TSAs among and within patients over time, and be attentive to individual experiences of TSAs.

Self-reported taste and smell alterations in patients under investigation for lung cancer.

UNLABELLED: This study of patients under investigation for lung cancer (LC) aims to: 1) examine the prevalence of self-reported taste and smell alterations (TSAs) and their relationships with demographic and clinical characteristics; and 2) explore nutritional importance of TSAs by examining their associations with patient-reported weight loss, symptoms interfering with food intake, and changes in food intake. METHODS: Patients were recruited consecutively during investigation for LC from one university hospital in Sweden. Patient-reported information on TSAs, demographics, six-month weight history, symptoms interfering with food intake, and changes in food intake was obtained. Relationships between TSAs and other variables were examined using two-tailed significance tests. In addition, putative explanatory factors for weight loss were explored in those patients diagnosed with LC, since a relationship between TSAs and weight loss was found in this group. RESULTS: The final sample consisted of 215 patients, of which 117 were diagnosed with primary LC within four months of study inclusion and 98 did not receive a cancer diagnosis. The 38% prevalence of TSAs was identical in both groups, and were generally reported as mild and not interfering with food intake. However, a statistically significant relationship between TSAs and weight loss was found among patients with LC, with a median weight change of - 5.5% and a higher frequency of weight loss ≥ 10%. Patients with LC and weight loss ≥ 10%, had higher frequency of reporting TSAs, of decreased food intake and of ≥ 1 symptom interfering with food intake compared with those with less weight loss. CONCLUSION: TSAs, although relatively mild, were present in 38% of patients with and without LC. Relationships between TSAs and weight loss were found among patients with LC, but not fully explained by decreased food intake. This highlights the complexity of cancer-related weight loss.

Characteristics of taste and smell alterations reported by patients after starting treatment for lung cancer.

PURPOSE: Taste and smell alterations (TSAs) in patients with lung cancer are poorly understood. This study investigates characteristics of TSAs when most severe, reported by patients after starting treatment for lung cancer. METHODS: Data was collected regarding TSAs, symptoms, food intake and nutritional status through structured interviews using the Taste and Smell Survey, the Patient-Generated Subjective Global Assessment and 3-day food diaries. This data derives from a longitudinal project and the interview with each patient when TSAs were most severe was purposefully selected for analysis. RESULTS: Sixty-one of the 89 patients reported TSAs, and the TSAs group were on average younger and more frequently smokers. Thirty-one patients reported symptoms impacting negatively on food intake, with 87 % in the TSAs group and 13 % in the no-TSAs group. Most commonly reported were loss of appetite, nausea and early satiety. Gender differences were seen with more women reporting stronger sensation(s) and more men reporting weaker sensation(s) and other changes. TSAs were described as affecting enjoyment of food and eating. A trend was seen where energy intakes declined with increasing TSAs. Energy intakes in the total study population were below recommended. CONCLUSION: TSAs varied in characteristics and interacted with other symptoms. Gender differences may highlight a need to investigate approaches for identification and management of TSAs in men and women. Patients reported TSAs impacting on food enjoyment, and the hypothesis that patients with higher TSS scores have lower nutritional intakes should be followed up with a larger study in the lung cancer population.

Reflections on the process of translation and cultural adaptation of an instrument to investigate taste and smell changes in adults with cancer.

Taste and smell changes are common and distressing symptoms in patients with cancer, which may contribute to decreased nutritional intake leading to malnutrition and reduced quality of life. Evidence-based knowledge available to healthcare staff regarding dietary counselling of patients with taste and smell changes is lacking. To be able to develop advice to patients, these symptoms need to be characterised and assessed. The Taste and Smell Survey (TSS) is a 16-item questionnaire in English, which has been used in Canada to investigate self-perceived changes in taste and smell reported by patients with cancer. As no equivalent instrument exists in Swedish, we therefore translated the TSS. This article describes and discusses experiences of using a 5-step process for translation and cultural adaptation of the TSS. Each of the five steps was found to elicit different, essential information contributing to the enhancement of the translation and building further upon refinements of the previous steps. Using a structured, multistep approach to translation and cultural adaptation, we have produced a robust instrument to investigate taste and smell changes specifically adapted for use in the Swedish language and culture.