Fatigue is a common symptom in post-polio syndrome (PPS) and can have a substantial impact on patients. There is a need for validated questionnaires to assess fatigue in PPS for use in clinical practice and research. The aim with this study was to assess the validity and reliability of the Swedish version of Multidimensional Fatigue Inventory (MFI-20) in patients with PPS using the Rasch model.
A total of 231 patients diagnosed with PPS completed the Swedish MFI-20 questionnaire at post-polio out-patient clinics in Sweden. The mean age of participants was 62 years and 61% were females. Data were tested against assumptions of the Rasch measurement model (i.e. unidimensionality of the scale, good item fit, independency of items and absence of differential item functioning). Reliability was tested with the person separation index (PSI). A transformation of the ordinal total scale scores into an interval scale for use in parametric analysis was performed. Dummy cases with minimum and maximum scoring were used for the transformation table to achieve interval scores between 20 and 100, which are comprehensive limits for the MFI-20 scale.
An initial Rasch analysis of the full scale with 20 items showed misfit to the Rasch model (p < 0.001). Seven items showed slightly disordered thresholds and person estimates were not significantly improved by rescoring items. Analysis of MFI-20 scale with the 5 MFI-20 subscales as testlets showed good fit with a non-significant x2 value (p = 0.089). PSI for the testlet solution was 0.86. Local dependency was present in all subscales and fit to the Rasch model was solved with testlets within each subscale. PSI ranged from 0.52 to 0.82 in the subscales.
This study shows that the Swedish MFI-20 total scale and subscale scores yield valid and reliable measures of fatigue in persons with post-polio syndrome. The Rasch transformed total scores can be used for parametric statistical analyses in future clinical studies.
Fatigue; MFI-20; Post-polio; Rasch analysis
To evaluate health-related quality of life (HRQOL), mood, and patient satisfaction in epilepsy surgery candidates before and 2 years after epilepsy surgery or presurgical investigation.
In this prospective study of 141 patients, 96 underwent surgery and 45 did not. Questionnaires at baseline and at 2-year follow-up included the generic 36-item Short Form Health Survey (SF-36), the Hospital Anxiety and Depression scale (HAD), and operated patients answered patient satisfaction questions. SF-36 scores were compared with scores from a matched sample from the Swedish norm population. Numbers were calculated of patients achieving a minimum important change (MIC) in the SF-36 Physical Composite Summary (PCS) and Mental Composite Summary (MCS).
At baseline, patients had significantly lower values than the norm on all SF-36 domains. At follow-up, operated patients were divided into seizure-free (International League Against Epilepsy [ILAE] class 1 and 2, n = 53) or with continued seizures (n = 43). No differences in baseline HAD or SF-36 values were found between these groups. Seizure-free patients reached the same levels as the norm in all SF-36 domains except Social Function. Operated patients with continued seizures and nonoperated patients had unchanged scores. Fifty-one percent of seizure-free patients had an improvement reaching MIC for PCS and 45% for MCS. Corresponding results for patients with continued seizures were 28% in PCS and 28% in MCS, for nonoperated 33% in PCS and 29% in MCS. HAD anxiety scores improved significantly in only the seizure-free patients. Of all operated patients, 80% were satisfied with having had surgery and 86% considered that they had benefited, whereas 20% thought that surgery caused some harm.
In patients who were seizure-free after epilepsy surgery HRQOL normalized and anxiety decreased. Operated patients overwhelmingly considered epilepsy surgery to be beneficial. Nonetheless, only about half of the seizure-free patients achieved important HRQOL improvements, suggesting that seizure freedom does not in and of itself guarantee improved patient well-being.
Quality of life; Patient satisfaction; Mood; Epilepsy surgery
To evaluate and compare 6-month effects of 8 weeks of an integrative treatment (IT), therapeutic acupuncture (TA), and conventional treatment (CT) in reducing symptoms of anxiety, depression and in improving health-related quality of life (HRQL) and sense of coherence (SOC) in psychologically distressed primary care patients.
Patients who had participated in an open, pragmatic randomized controlled trial were followed up six months after treatment. The study sample consisted of 120 adults (40 per treatment arm) aged 20 to 55 years referred from four different primary health care centres in western Sweden for psychological distress. Assessments were made at baseline after eight weeks and after 24 weeks. Anxiety and depression were evaluated with the Hospital Anxiety and Depression scale (HADS), HRQL with the SF-36 Mental Component Summary scores (MCS) and SOC with the Sense of Coherence-13 questionnaire.
No baseline differences were found between groups on any outcome variable. At 24 weeks, IT and TA had significantly better values than CT on all variables. All three groups showed significant improvements from baseline on all variables, except HAD depression in CT; however, improvements were significantly greater in IT and TA than in CT. IT and TA did not differ on any outcome variable. Effect sizes were large in IT and TA for all variables and small or moderate in CT. Improvements on all variables seen after 8-weeks of IT and TA remained stable at 24 weeks and the CT group improved on HAD anxiety.
IT and TA seem to be more beneficial than CT in reducing anxiety, depression, and in improving quality of life and sense of coherence after 24 weeks of follow up in patients with psychological distress. More research is needed to confirm these results.
ISRCTN trial number NCT01631500.
Acupuncture; Anxiety; Depression; Integrative treatment; Person-centred care; Primary care; Psychological distress; Quality of life; Sense of coherence
Hypertension is a significant risk factor for heart disease and stroke worldwide. Effective treatment regimens exist; however, treatment adherence rates are poor (30%–50%). Improving self-management may be a way to increase adherence to treatment. The purpose of this paper is to describe the phases in the development and preliminary evaluation of an interactive mobile phone-based system aimed at supporting patients in self-managing their hypertension. A person-centered and participatory framework emphasizing patient involvement was used. An interdisciplinary group of researchers, patients with hypertension, and health care professionals who were specialized in hypertension care designed and developed a set of questions and motivational messages for use in an interactive mobile phone-based system. Guided by the US Food and Drug Administration framework for the development of patient-reported outcome measures, the development and evaluation process comprised three major development phases (1, defining; 2, adjusting; 3, confirming the conceptual framework and delivery system) and two evaluation and refinement phases (4, collecting, analyzing, interpreting data; 5, evaluating the self-management system in clinical practice). Evaluation of new mobile health systems in a structured manner is important to understand how various factors affect the development process from both a technical and human perspective. Forthcoming analyses will evaluate the effectiveness and utility of the mobile phone-based system in supporting the self-management of hypertension.
adherence; blood pressure; cellular phone; communication; devices; person-centered care
To evaluate and compare effects of an integrative treatment (IT), therapeutic acupuncture (TA), and conventional treatment (CT) in alleviating symptoms of anxiety and depression in psychologically distressed primary care patients.
An open, pragmatic randomized controlled trial comparing the three treatment regimens at four and eight weeks after treatment. The study sample consisted of 120 adults (40 per treatment arm) aged 20 to 55 years referred from four different primary health care centres in western Sweden for psychological distress. Psychological distress was evaluated at baseline, and after 4 and 8 weeks of treatment using the Hospital Anxiety and Depression scale (HAD). Treatment sessions lasted about 60 minutes in IT and 45 minutes in TA.
No baseline differences were found between groups on HAD depression or anxiety. HAD anxiety and depression decreased significantly more in the IT and TA groups than in the CT group both after 4 and 8 weeks of treatment, but not between IT and TA. Improvements in the TA and IT groups were large and clinically significant, whereas CT effects were small and clinically non-significant.
Both IT and TA appear to be beneficial in reducing anxiety and depression in primary care patients referred for psychological distress, whereas CT does not. These results need to be confirmed in larger, longer-term studies addressing potentially confounding design issues in the present study.
ISRCTN trial number NCT01631500.
Acupuncture; Anxiety; Depression; Holistic; Integrative treatment; Primary care; Psychological distress; Salutogenesis
Few population-based studies assessing IPV among randomly selected women and men have been conducted in Sweden. Hence, the aim of the current study was to explore self-reported exposure, associated factors, social and behavioural consequences of and reasons given for using psychological, physical and sexual intimate partner violence (IPV) among women and men residing in Sweden.
Cross-sectional postal survey of women and men aged 18–65 years. Bivariate and multivariate logistic regression analyses were used to identify factors associated with exposure to IPV.
Past-year IPV exposure rates were similar in women and men; however, earlier-in-life estimates were higher in women. Poor to moderate social support, growing up with domestic violence and being single, widowed or divorced were associated with exposure to all forms of IPV in men and women. Women and men tended to report different social consequences of IPV.
Our finding that women reported greater exposure to IPV earlier-in-life but not during the past year suggests the importance of taking this time frame into account when assessing gender differences in IPV. In-depth, qualitative studies that consider masculinities, femininities power and gender orders would be beneficial for extending and deepening our understanding of the gendered matter of IPV.
Intimate partner violence; Sweden; WHO VAW instrument; Men; Women
To explore psychometric properties of the Violence Against Women instrument in a randomly selected national sample of women (N=573) aged 18–65 years and residing in Sweden.
Cross-sectional survey study.
A postal survey was sent to 1006 women between January and March 2009, during which 624 women (62%) returned the questionnaire. 51 women who did not answer any of the violence items were excluded from the analyses, resulting in a final sample of 573 women.
Primary and secondary outcome measures
Self-reported exposure to psychological, physical and sexual intimate partner violence.
Cronbach's α coefficients were 0.79 (psychological scale), 0.80 (physical scale), 0.72 (sexual scale) and 0.88 (total scale). A predetermined three-component solution largely replicated the explored three component conceptual model of the Violence Against Women instrument. The instrument was able to discriminate between groups known from previous studies to differ in exposure to physical and/or sexual violence, that is, respondents with poor versus good self-rated health and witnessed versus not witnessed physical violence at home when growing up. Past-year prevalence of physical (8.1%; 95% CI 5.9 to 10.3) and sexual (3%; 1.6 to 4.4) violence was similar to that reported in other Nordic studies; however, earlier-in-life prevalence was lower in the current study (14.3%; 95% CI 11.4 to 17.2 and 9.2%; 95% CI 6.8 to 11.6, respectively). Reported exposure rates were higher than those obtained from a concurrently administered instrument (NorVold Abuse Questionnaire).
The Violence Against Women instrument demonstrated good construct validity and internal reliability in an adult female population in Sweden. However, further studies examining these and other psychometric properties need to be conducted in other countries.
Public Health; Statistics & Research Methods; Epidemiology
Person-centred care (PCC) emphasizes a partnership in care between patients and healthcare professionals and is advocated by WHO as a key component of quality health care. We evaluated outcomes of PCC in hospitalized patients with chronic heart failure (CHF) with respect to the length of hospital stay (LOS), activities of daily living (ADL), health-related quality of life (HRQL) and 6-month readmission rate.
Methods and results
During 2008–2010, 248 consecutive patients hospitalized for symptoms of worsening CHF were enrolled in a controlled before and after designed study. A Usual care group (n= 123) was recruited according to pre-defined criteria to map usual CHF care and assess outcomes at five designated hospital wards. Based on the mapping, a panel of in-house clinicians and researchers developed measures aimed at aligning usual care with basic PCC principles. These measures were incorporated into a study protocol to guide care procedures at the same five wards. Person-centred care was then implemented at these wards and evaluated in 125 patients. Both length of hospital stay and 6-month readmission were extracted from patient records. Activities of daily living were evaluated at baseline and discharge and HRQL was evaluated at baseline and after 3 months. In the analysis of all patients, the LOS was reduced by 1 day (P= 0.16) while retaining ADL (P= 0.07). When PCC was fully implemented (per protocol analysis), LOS was reduced by 2.5 days (P= 0.01) and the ADL-level better preserved (P= 0.04). Health-related quality of life and time-to-first readmission did not differ.
In this proof-of-concept study, our findings suggest that a fully implemented PCC approach shortens hospital stay and maintains functional performance in patients hospitalized for worsening CHF, without increasing risk for readmission or jeopardizing patients' HRQL.
Patient-centred care; Chronic heart failure; Disease management programmes; Person-centered medicine; Person-centered care
The aim of this study was to assess patient-reported impacts and health-related quality of life (HRQL) of a 2-year follow-up programme in a large cohort of patients with stationary, non-functioning, adrenal incidentalomas (AIs) in western Sweden. 145 patients (mean age 68 years, 62 % females) with AI from a prospective study in western Sweden were studied. All had completed a 2-year follow-up programme by November 2007, without evidence of adrenal malignancy or hormone over-production. To evaluate patient-reported impacts and HRQL, an eight-item adrenal incidentaloma impact questionnaire was used retrospectively, together with the hospital anxiety and depression scale, and the short form-36. There were 111 patients (mean age 67 years, 63 % females) who responded to the questionnaire (response rate 77 %). 77 % reported that the AI diagnosis had caused them to be worried; however, fewer than 20 % had thought about the lesion often during the follow-up programme, and only 3 % had felt that it had a large impact on their current daily life. Only 4 % stated that the follow-up programme had been a negative experience, nevertheless 10 % reported a negative impact on their HRQL during the follow-up programme. Only 2 % stated that release from follow-up caused worry to any degree. In total, 29 % had possible anxiety, and 30 % had possible depression, probably reflecting significant co-morbidity. Possible anxiety correlated with a more negative experience of the follow-up programme. In conclusion, the 2-year follow-up programme for patients with AI was well tolerated. Nonetheless, a small number remained worried throughout follow-up, suggesting the need for tailored counselling in individual patients to ameliorate negative impacts of follow-up.
Adrenal gland neoplasm; Incidental findings; Computed tomography; Quality of life; Follow-up; Adult
To explore the psychometric properties of the WHO's Violence Against Women instrument (VAWI) in a randomly selected national sample of Swedish men.
Cross-sectional survey study.
A postal survey was sent to 1009 men between January and March 2009, during which 458 men (45.4%) returned the questionnaire. 49 men who did not answer any of the violence items were excluded from the analyses, resulting in a final sample of 399 men.
Primary and secondary outcome measures
Self-reported exposure to psychological, physical and sexual intimate partner violence.
Cronbach's α were 0.74 (psychological scale), 0.86 (physical scale), 0.82 (sexual scale) and 0.88 (total scale). Principal components analysis did not corroborate the conceptual three-dimensional model of the VAWI and other constructs were found. Past-year prevalence of physical (7.6%; 95% CI 5.0% to 10.2%) and sexual (2.3%; 95% CI 0.8% to 3.8%) violence was higher than in other Nordic studies; earlier-in-life prevalence of physical violence (6.8%; CI 95% 4.3% to 9.3%) was lower and sexual violence (2.5%; 95% CI 1.0% to 4.0%) was higher. Reported exposure rates were generally higher than those obtained from a concurrently administered instrument (NorVold Abuse Questionnaire).
The VAWI conceptual model was only partially replicated and boundaries between psychological, physical and sexual acts of violence were indistinct among men exposed to intimate partner violence (IPV). This finding suggests that there is need for research instruments assessing intimate partner violence to be validated separately in male and female samples in order to ensure their suitability for the respective groups. Furthermore, theoretical frameworks for understanding men's exposure to intimate partner violence need to be advanced and should serve to guide in the development and evaluation of gender-specific IPV assessment instruments.
Epidemiology; Public Health; Statistics; Research Methods
Standardized patient surveys are widely used for assessing quality of healthcare from the patient perspective. An important purpose of such surveys is to identify disparities in care among different patient groups. The purpose of this study was to 1.) evaluate aspects of the validity of the adapted Swedish version of the Picker Patient Care Experience -15 (PPE-15) survey and 2.) examine the explanatory value of various socio-demographic and health characteristics in predicting patients’ care experiences.
A retrospective cross-sectional study design was used. Patients discharged from internal medicine wards at regional and university hospitals in different parts of Sweden during 2010 were invited to participate in the regularly administered national care-experience survey for hospital care. The internal validity of the PPE-15 was assessed with Cronbach’s alpha and item-scale correlations. Pearson product–moment correlation coefficients were used to compare PPE-15 total scores with overall care satisfaction ratings and Spearman correlation coefficients were used to compare PPE-15 total scores with various patient characteristics. Multiple linear regression analysis was performed to examine the influence of various patient characteristics on PPE-15 scores.
The response rate was 66% (n = 34 603). Cronbach’s alpha was 0.87. The correlation between the PPE-15 total score and overall care satisfaction was high (0.62, p < 0.0001). Good self-rated health (SRH) and having Swedish as native language were associated with better care experiences and poorer experiences with greater healthcare utilization, higher age, functional impairment and being female. All examined characteristics, except language, were significant predictors in the regression model and SRH was the strongest predictor; however, the model explained only 7% of the total variance. Vulnerable patients (i.e. poor SRH and functional impairment) reported significantly less positive care experiences than did non-vulnerable patients (mean PPE-15 score 75 vs 85; p < 0.0001).
Our results supported the internal validity of the Swedish adapted version of the PPE-15. The explanatory value of the examined patient socio-demographic and health characteristics was low, suggesting the need for exploring other patient-related determinants of care experiences. Our findings also suggest a care paradox: patients in greatest need of hospital care are least satisfied with the quality of the care they receive.
Patient-reported outcome; Self-rated health; Functional status; Frail; Care experience; Care disparity; Patient-centred care
A father’s experience of the birth of his first child is important not only for his birth-giving partner but also for the father himself, his relationship with the mother and the newborn. No validated questionnaire assessing first-time fathers' experiences during childbirth is currently available. Hence, the aim of this study was to develop and validate an instrument to assess first-time fathers’ experiences of childbirth.
Domains and items were initially derived from interviews with first-time fathers, and supplemented by a literature search and a focus group interview with midwives. The comprehensibility, comprehension and relevance of the items were evaluated by four paternity research experts and a preliminary questionnaire was pilot tested in eight first-time fathers. A revised questionnaire was completed by 200 first-time fathers (response rate = 81%) Exploratory factor analysis using principal component analysis with varimax rotation was performed and multitrait scaling analysis was used to test scaling assumptions. External validity was assessed by means of known-groups analysis.
Factor analysis yielded four factors comprising 22 items and accounting 48% of the variance. The domains found were Worry, Information, Emotional support and Acceptance. Multitrait analysis confirmed the convergent and discriminant validity of the domains; however, Cronbach’s alpha did not meet conventional reliability standards in two domains. The questionnaire was sensitive to differences between groups of fathers hypothesized to differ on important socio demographic or clinical variables.
The questionnaire adequately measures important dimensions of first-time fathers’ childbirth experience and may be used to assess aspects of fathers’ experiences during childbirth. To obtain the FTFQ and permission for its use, please contact the corresponding author.
Fathers; Childbirth; Questionnaire; Validity; Reliability
The study examines the possible linkage between fatigue and intestinal injury during pelvic radiotherapy in anal and uterine cancer patients.
The association between cancer-related fatigue and pathological processes in the body is largely unknown. This study was designed to investigate a possible linkage between fatigue and intestinal injury during pelvic radiotherapy.
Twenty-nine women undergoing pelvic radiotherapy for anal or uterine cancer were prospectively followed. Fatigue and diarrhea were assessed using patient self-reported questionnaires. Plasma citrulline concentration, as a sign of intestinal injury, and C-reactive protein, orosomucoid, albumin, α1-antitrypsin, and haptoglobin, as signs of systemic inflammation, were analyzed.
Fatigue increased significantly (p < .001) and citrulline decreased significantly (p < .001) during treatment. A significant negative correlation (r = −0.40; p < .05) was found between fatigue and epithelial atrophy in the intestine (as assessed by plasma citrulline) after 3 weeks of treatment and a significant positive correlation (r = 0.75; p < .001) was found between fatigue and diarrhea. Signs of systemic inflammation were evident, with significant increases in serum orosomucoid, serum haptoglobin (p < .05) and serum α1-antitrypsin (p < .001) and a significant decrease in serum albumin (p < .001).
The present study indicates a link between fatigue and intestinal injury during pelvic radiotherapy. This observation should be considered as a preliminary finding because of the small sample size but may serve as a rationale for therapeutic interventions aimed at alleviating both fatigue and gastrointestinal symptoms during pelvic radiotherapy.
Radiotherapy; Cancer-related fatigue; Citrulline; Acute-phase proteins
Negative experiences of first childbirth increase risks for maternal postpartum depression and may negatively affect mothers' attitudes toward future pregnancies and choice of delivery method. Postpartum questionnaires assessing mothers' childbirth experiences are needed to aid in identifying mothers in need of support and counselling and in isolating areas of labour and birth management and care potentially in need of improvement. The aim of this study was to develop and evaluate a questionnaire for assessing different aspects of first-time mothers' childbirth experiences.
Childbirth domains were derived from literature searches, discussions with experienced midwives and interviews with first-time mothers. A draft version of the Childbirth Experience Questionnaire (CEQ) was pilot tested for face validity among 25 primiparous women. The revised questionnaire was mailed one month postpartum to 1177 primiparous women with a normal pregnancy and spontaneous onset of active labor and 920 returned evaluable questionnaires. Exploratory factor analysis using principal components analysis and promax rotation was performed to identify dimensions of the childbirth experience. Multitrait scaling analysis was performed to test scaling assumptions and reliability of scales. Discriminant validity was assessed by comparing scores from subgroups known to differ in childbirth experiences.
Factor analysis of the 22 item questionnaire yielded four factors accounting for 54% of the variance. The dimensions were labelled Own capacity, Professional support, Perceived safety, and Participation. Multitrait scaling analysis confirmed the fit of the four-dimensional model and scaling success was achieved in all four sub-scales. The questionnaire showed good sensitivity with dimensions discriminating well between groups hypothesized to differ in experience of childbirth.
The CEQ measures important dimensions of the first childbirth experience and may be used to measure different aspects of maternal satisfaction with labour and birth.
Self-management support tools using technology may improve adherence to hypertension treatment. There is a need for user-friendly tools facilitating patients’ understanding of the interconnections between blood pressure, wellbeing and lifestyle. This study aimed to examine comprehension, comprehensiveness and relevance of items, and further to evaluate the usability and reliability of an interactive hypertension-specific mobile phone self-report system. Areas important in supporting self-management and candidate items were derived from five focus group interviews with patients and healthcare professionals (n = 27), supplemented by a literature review. Items and response formats were drafted to meet specifications for mobile phone administration and were integrated into a mobile phone data-capture system. Content validity and usability were assessed iteratively in four rounds of cognitive interviews with patients (n = 21) and healthcare professionals (n = 4). Reliability was examined using a test–retest. Focus group analyses yielded six areas covered by 16 items. The cognitive interviews showed satisfactory item comprehension, relevance and coverage; however, one item was added. The mobile phone self-report system was reliable and perceived easy to use. The mobile phone self-report system appears efficiently to capture information relevant in patients’ self-management of hypertension. Future studies need to evaluate the effectiveness of this tool in improving self-management of hypertension in clinical practice.
Cellular phone; content validity; hypertension; medication adherence; self-care; usability