Health-related quality of life and socioeconomic situation among diastrophic dysplasia patients in Finland.

OBJECTIVE: The purpose of the present study was to gain a comprehensive view of the quality of life and socio-economic conditions in a more representative sample of patients with diastrophic dysplasia than previously presented. METHODS: The study sample comprised 115 patients with diastrophic dysplasia, aged over 18 years. The patients were contacted, and 68 patients (59%) agreed to participate in the study. They answered a structured questionnaire, which included the items of RAND-36 and Finn-Health Assessment Questionnaire (Finn-HAQ) questionnaires. The Finn-HAQ items were linked to the categories of the International Classification of Functioning, Disability and Health (ICF). Population controls for matching the participating patients for age and sex were identified in the Finnish population registry. Demographic and social factors (educational status, employment status and household income) were collected in separated questions. RESULTS: RAND-36 showed significantly lower physical functioning in the group of diastrophic dysplasia patients than in the control group. Also, the differences in scores for energy and social functioning were significant. In the mental component scales, no significant difference was found between the groups. When compared with the controls, we found significantly lower levels in all 3 ICF components of functioning in the group of patients when Finn-MDHAQ items linked to ICF were used. Almost 75% of patients with diastrophic dysplasia belonged to the group of people with minor/low income. Some or clear worsening of economic situation due to diastrophic dysplasia was reported by 25 (58%) female and 17 (68%) male patients. CONCLUSION: In their daily living, patients with diastrophic dysplasia have marked physical difficulties, which affect their quality of life, participation in society and their financial situation. It seems that the mental situation is not greatly affected, but a more detailed study is needed to evaluate and illuminate the psychological consequences of this severe skeletal dysplasia. Overall, the pieces of information in the present study are of high importance when designing and reorganizing rehabilitation and in supportive therapy and treatment of patients with diastrophic dysplasia.

Validation of a Finnish version of the Fibromyalgia Impact Questionnaire (Finn-FIQ).

Background and purpose Fibromyalgia (FM) is a chronic pain syndrome, which affects up to 5% of the general population. The aetiology of FM is unclear. The lack of specific diagnostic laboratory tests or imaging options combined with the severe burden on both patients and society caused by the FM syndrome demands the development of valid instruments able to measure the current health status of the FM patients. The Fibromyalgia Impact Questionnaire (FIQ) is the most widely used of these instruments. Our objective was to translate the Fibromyalgia Impact Questionnaire (FIQ) into Finnish and evaluate its validity in Finnish speaking FM patients. Methods FIQ was translated by two bilingual researchers into the Finnish version (Finn-FIQ) and linked to the categories of International Classification of Functioning, Disability and Health (ICF). Finn-FIQ was administered to 162 patients who had prior fibromyalgia diagnoses M79.0 according to ICD-10 year 2006 version. They also filled in the Health Assessment Questionnaire (HAQ), the Rand 36-item Health Survey (RAND-36), the Beck Depression Inventory IA (BDIIA), the Chronic Pain Acceptance Questionnaire (CPAQ), the International Physical Activity Questionnaire Short Form (IPAQ), and they assessed their general well-being on a 0-100 mm visual analogue scale while attending a clinical check-up visit. Internal consistency was estimated according to Cronbach's alpha internal consistency. An exploratory factor analysis was performed to identify related items and to show construct validity. Correlation coefficients were calculated by the Spearman method. Results From the 162 participants 153 were female and 9 male, 119 (73%) had an active job or were students, 21 (13%) were unemployed, 16 (10%) were retired and 6 (4%) were on sick leave. The mean age was 47 years. The internal consistency value (95% CI) was 0.90 for the overall Finn-FIQ. The factor analysis performed for construct analysis showed that Finn-FIQ was loaded on 4 factors. These factors were loaded on components of ICF and explained 69% of total variance. Significant correlations were obtained between patients own assessments of general well-being and Finn-FIQ total score (r = 0.64 [95% CI 0.53-0.73]) and also between Finn-FIQ total score and HAQ total score (r = 0.56 [95% CI 0.44-0.66]). Finn-FIQ questions had significant correlations with RAND-36 domains. Conclusion Finn-FIQ is a valid and feasible instrument to mirror the functioning of FM patients according to its internal consistency, correlation to general well-being, convergent validity and response rate. It covers the main components of the ICF framework hence reflecting the whole spectrum of functioning. Implications In our study Finn-FIQ was proven as a valid instrument with Finnish speaking FM patients. Original FIQ and other validated translations have already confirmed their place in fibromyalgia research. After this study Finnish fibromyalgia research can be included in those using the best-known instrument in validated form and native language. Current study showed also Finn-FIQ's ability to measure functioning of the FM patients, and it had good applicability among Finnish speaking patients. Therefore it can be recommended also for monitoring individual FM patients and their functioning for example during different treatment trials.

Promoting mobility after hip fracture (ProMo): study protocol and selected baseline results of a year-long randomized controlled trial among community-dwelling older people.

BACKGROUND: To cope at their homes, community-dwelling older people surviving a hip fracture need a sufficient amount of functional ability and mobility. There is a lack of evidence on the best practices supporting recovery after hip fracture. The purpose of this article is to describe the design, intervention and demographic baseline results of a study investigating the effects of a rehabilitation program aiming to restore mobility and functional capacity among community-dwelling participants after hip fracture. METHODS/DESIGN: Population-based sample of over 60-year-old community-dwelling men and women operated for hip fracture (n = 81, mean age 79 years, 78% were women) participated in this study and were randomly allocated into control (Standard Care) and ProMo intervention groups on average 10 weeks post fracture and 6 weeks after discharged to home. Standard Care included written home exercise program with 5-7 exercises for lower limbs. Of all participants, 12 got a referral to physiotherapy. After discharged to home, only 50% adhered to Standard Care. None of the participants were followed-up for Standard Care or mobility recovery. ProMo-intervention included Standard Care and a year-long program including evaluation/modification of environmental hazards, guidance for safe walking, pain management, progressive home exercise program and physical activity counseling. Measurements included a comprehensive battery of laboratory tests and self-report on mobility limitation, disability, physical functional capacity and health as well as assessments for the key prerequisites for mobility, disability and functional capacity. All assessments were performed blinded at the research laboratory. No significant differences were observed between intervention and control groups in any of the demographic variables. DISCUSSION: Ten weeks post hip fracture only half of the participants were compliant to Standard Care. No follow-up for Standard Care or mobility recovery occurred. There is a need for rehabilitation and follow-up for mobility recovery after hip fracture. However, the effectiveness of the ProMo program can only be assessed at the end of the study. TRIAL REGISTRATION: Current Controlled Trials ISRCTN53680197.

Reliability and validity of the finnish version of the neck disability index and the modified neck pain and disability scale.

STUDY DESIGN: Translation and psychometric testing. OBJECTIVE: To cross-culturally adapt the Neck Disability Index (NDI) to the Finnish language and to assess the reliability and validity of the Finnish version of the Neck Disability Index (NDI-FI) and the modified Neck Pain and Disability Scale (mNPDS-FI) in Finnish patients with neck pain. SUMMARY OF BACKGROUND DATA: Although largely used, no previous reports exist on the translation process or the testing of the psychometric properties of the Finnish version of the NDI or the mNPDS used in Finland. METHODS: The translation of the questionnaire from English into Finnish was done in accordance with the published guidelines. A total of 101 patients with neck pain participated in the study. The reliability of the questionnaires was tested using a test-retest procedure at 2-week intervals. Further psychometric testing was done by assessing the construct validity and internal consistency of the questionnaires. RESULTS: Test-retest reliability (intraclass correlation coefficients) was excellent for the NDI-FI (0.94) and mNPDS-FI (0.91). Factor analysis identified 1 factor for the NDI-FI and 3 factors for the mNPDS-FI; pain intensity, work ability, and activities of daily living. The internal consistency value (Cronbach alpha) for the NDI-FI was 0.85, and 0.84, 0.83, and 0.82, respectively, for the 3 factors of the mNPDS-FI. The correlation between neck pain and the NDI-FI was 0.58 (P < 0.001) and 0.72 for the mNPDS-FI (P < 0.001). A statistically significant linear relationship was observed between self-estimated coping and the outcomes of the NDI-FI and the mNPDS-FI. CONCLUSION: The NDI-FI and the mNPDS-FI are reliable, valid instruments for assessing disability among Finnish patients with neck pain.

Subaxial cervical vertebrae in patients with juvenile idiopathic arthritis--something special?

OBJECTIVES: To describe the main dimensions of the cervical vertebrae and spinal canal in two groups with juvenile idiopathic arthritis (JIA) and a non-inflammatory control group. METHODS: There were altogether 158 female patients in three different groups included in the study: a group with severe, complicated JIA (sJIA), a population based JIA group (pJIA), and fibromyalgia patients as a non-inflammatory control group (pFM). The patients' clinical records and cervical spine radiographs taken in adult age (>17 years) were evaluated. RESULTS: The patients with sJIA had the mean area of the 3rd-6th cervical vertebrae bodies and the average width and height of the 3rd-6th cervical vertebrae bodies significantly smaller than the patients in the pJIA and pFM groups. The mean value of the maximal difference between the successive vertebral body areas of each individual was significantly larger in the sJIA group than the other groups (p=0.047; the body height adjusted). There were no significant differences in the mean diameter of the sagittal spinal canal between study groups. CONCLUSIONS: Inflammatory changes of the cervical spine are common, and growth disturbances of cervical vertebrae in patients with JIA have been described previously. We found that patients with severe complicated JIA have a smaller cervical vertebral body size in general. They also have more differences in the sizes of their own vertebrae, representing growth disturbances of individual vertebral bodies. This is probably caused by the inflammatory disease and/or its more aggressive pharmacotherapy. The spinal canal diameter was only slightly smaller in the sJIA group. Thus the disturbed growth of the vertebral body in sJIA does not, in general, increase the risk of spinal canal compression.

Self-report functioning according to the ICF model in elderly patients with rheumatoid arthritis and in population controls using the multidimensional health assessment questionnaire.

OBJECTIVE: To assess disability and functioning of elderly patients with rheumatoid arthritis (RA) and population controls by linking the items included in the self-report Multidimensional Health Assessment Questionnaire (MDHAQ) with components of the WHO International Classification of Functioning, Disability and Health (ICF) instrument. METHODS: In total, 1439 patients with RA (mean age 66 yrs, men 29%) and 957 population controls (65 yrs, men 27%) completed a mailed questionnaire. Functioning was recorded by the Finnish version of MDHAQ. Data included comorbidity, subjective health, education level, employment, exercise habits, self-report joint pain/tenderness, and, for patients, the disease duration. RESULTS: Patients had lower levels of functioning compared to controls in all ICF domains, with the exception that male patients functioned comparably to male controls in the "general tasks and demands" domain. In patients, disease activity, education, exercise frequency, and comorbidities were expectedly associated with lower functioning in the body structure and function component, while male sex and subjectively perceived health were associated with more favorable functioning. In the activity and participation components, disease activity, exercise frequency, and comorbidities were associated with impaired functioning, while better health on self-report was associated with better functioning. CONCLUSION: There is an extra burden of disability in elderly patients with RA compared to the reference population. With a large patient and control population sample, our study shows that use of the self-report MDHAQ identifies all 3 main components of the ICF framework, thus covering a wide spectrum of functioning. Elderly patients with RA, in comparison to population controls, encounter more difficulties in daily activities and their social life.

Changes in the total Oswestry Index and its ten items in females and males pre- and post-surgery for lumbar disc herniation: a 1-year follow-up.

To study the characteristics and changes in the total Oswestry Disability Index (ODI) and in its ten component items in female and male patients pre- and post-surgery for lumbar disc herniation. Ninety-eight patients [mean (SD) age 43 (13), 61% males] undergoing lumbar disc herniation surgery were selected for this clinical 12-month follow-up. Subjective disability and back and leg pain were assessed by ODI version 1.0 and the visual analog scale. Pre-operatively females had a significantly higher mean (SD) total ODI [59(3)] than males [51(2)] (P = 0.030). Females were more disabled in the walking, sex life, social life and travelling items of the ODI compared to males. The total Oswestry decreased by 38 (95% CI - 44 to - 31) in females and by 34 (- 39 to - 30) in males at the 1-year follow-up. Most of the improvement (88% in females and 80% in males) occurred during the first 6 weeks; thereafter the changes were minor. In males the changes were greatest in pain, social life and travelling and in females in walking, social life and travelling. Internal consistency value of ODI was 0.88 (95% CI 0.82-0.91). Item analysis of the ODI showed that all the items except pain had high corrected item correlation. As recovery following lumbar disc surgery occurred to a great extent during the first 6 weeks, the early post-operative outcome appears to be quite a reliable indicator of the overall post-operative outcome over the 1-year follow-up. The ODI proved to capture a wide range of disability in these lumbar disc surgery patients, thereby supporting the future use of the index. The "pain intensity" component, which collects data on the use of painkillers in version 1.0 of the ODI did not support the item structure of the index in this study. The use of ODI version 2.0 might remove this problem.

Functioning and preferences for improvement of health among patients with juvenile idiopathic arthritis in early adulthood using the WHO ICF model.

OBJECTIVE: To evaluate functioning and preferences for health among young adult patients with juvenile idiopathic arthritis (JIA) and controls. The WHO International Classification of Functioning, Disability and Health (ICF) was used as a framework. METHODS: The patient files of a rheumatology hospital were screened to identify patients with juvenile arthritis born 1976 to 1980. Functioning was measured by the Finnish version of the Multidimensional Health Assessment Questionnaire (MDHAQ) within the framework of the ICF. Preferences in improvement of health were measured by the Finnish version of the Arthritis Impact Measurement Scales 2. Age and sex matched controls from the community were selected from the Finnish population registry. RESULTS: In all, 123 patients with a mean age of 23 (SD 21-26) years participated in the followup study. The mean time from diagnosis to followup was 16.2 years. Among them, 35% (n = 43) were in remission at followup. Lower levels of functioning for 3 ICF components were found in patients with active disease compared to controls. JIA patients with active disease had more pain and lower levels of mobility, self-care, and domestic and social life compared to controls. Patients with active disease differed from those in remission with pain in preferences for improvement of health. CONCLUSION: Patients with active disease need active treatment and rehabilitation to maintain functioning and decrease pain. The ICF offers a promising model to examine the outcomes of adult patients with JIA. Application of the MDHAQ is supported by our evaluation studies in young adults with JIA.

Evaluation of the MDHAQ in Finnish patients with RA [corrected].

OBJECTIVE: To study the characteristics of the Multidimensional Health Assessment Questionnaire (MDHAQ) in Finnish patients with rheumatoid arthritis. METHODS: The reliability of the questionnaire was tested by test-retest procedure. Construct validity was studied by factor analysis and convergent validity by calculating correlations between the Finnish MDHAQ (Finn-MDHAQ) scales and the Finnish Health Assessment Questionnaire (HAQ) and the Finnish Arthritis Impact Measurement Scales (Finn-AIMS2). Correlations between Finn-MDHAQ and measures of clinical characteristics, disease activity, and functional class were also measured. An item analysis was made of the Finn-MDHAQ scales Function (FN) and Psychological (PS). RESULTS: Internal consistency on the FN scale was 0.92 (95% lower limit 0.89) and 0.66 (0.56) on the PS scale. Reproducibility (95% CI) on FN was 0.93 (0.82 to 0.97) and on PS 0.84 (0.70 to 0.92). Factor analysis identified 2 factors, mobility of upper extremities and trunk, and mobility of lower extremities. Strong correlations were found between the FN scale and HAQ and physical subscales of Finn-AIMS2 and between PS and the psychological subscales of Finn-AIMS2. In item analysis corrected item correlation was high on the Finn-MDHAQ scales, except in one item on the PS scale. CONCLUSION: The Finn-MDHAQ is an applicable, reliable, and valid instrument for the part of the FN scale measuring functional ability in Finnish rheumatic patients. The incongruity in the PS scale structure that produced moderate internal consistency can be overcome with minor modifications.