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ABSTRACT: Outcome assessment in haemophilia is important to assess results of prophylactic treatment. Recently, the Haemophilia Joint Health Score (HJHS) was developed to assess early joint damage in children with haemophilia. Thus, the aim of this study was to assess reliability and explore validity of the HJHS in teenagers and young adults with haemophilia. Twenty-two patients with haemophilia (mean age 20.4, range 14-30, including 15 severe) were assessed by the HJHS1.0, Haemophilia Activities List (HAL), SF36 and self-evaluation was performed using a Visual Analogue Scale (VAS) scale. A subset of 12 patients were assessed by three physiotherapists to establish interobserver reliability (intraclass correlation coefficient: ICC). Total HJHS1.0 scores were calculated without overall global gait. Validity was explored by the assessment of Pearson's correlation with all outcome parameters and recent Pettersson scores. Overall outcome was good, with median HJHS score of 5.5 of a maximum 144 (range 0-34), median patients' VAS of 96.5 and maximum scores for HAL and SF36 physical functioning for the majority of patients. Pettersson scores were low (median 3.5 of 78, N = 18). Interobserver reliability was good (ICC 0.84), with limits of agreement of ±7.2 points. ICC was unaffected by different score calculation methods. Exploration of validity in 22 patients showed weak correlations of HJHS scores with patients' VAS (0.33) and HAL (-0.40) and strong correlations with SF36-PF (-0.66) and Pettersson scores (0.86). These results suggest that interobserver reliability of the HJHS1.0 in teenagers and young adults with limited joint damage is excellent. Preliminary data on validity were similar or better than those in children.
Haemophilia 06/2013; · 2.60 Impact Factor
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ABSTRACT: The aim of this article is to provide an up-to-date overview on paediatric haemophilia care in the world, with emphasis on medical treatment, rehabilitation, and orthopaedic surgery. The reason these specific professions caregivers are included is that over 90% of bleeding episodes in people with haemophilia (PWH) occur within the musculoskeletal system; and of these 80% of bleedings occur in joints.
Haemophilia 07/2012; 18 Suppl 4:94-100. · 2.60 Impact Factor
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ABSTRACT: This project aimed to develop guidelines for use during in-hospital rehabilitation after combinations of multiple joint procedures (MJP) of the lower extremities in persons with haemophilia (PWH). MJP are defined as surgical procedures on the ankles, knees and hips, performed in any combination, staged, or during a single session. MJP that we studied included total knee arthroplasty, total hip arthroplasty and ankle arthrodesis. Literature on rheumatoid arthritis demonstrated promising functional results, fewer hospitalization days and days lost from work. However, the complication rate is higher and rehabilitation needs optimal conditions. Since 1995, at the Van Creveldkliniek, 54 PWH have undergone MJP. During the rehabilitation in our hospital performed by experienced physical therapists, regular guidelines seemed useless. Guidelines will guarantee an optimal physical recovery and maximum benefit from this enormous investment. This will lead to an optimal functional capability and optimal quality of life for this elderly group of PWH. There are no existing guidelines for MJP, in haemophilia, revealed through a review of the literature. Therefore, a working group was formed to develop and implement such guidelines and the procedure is explained. The total group of PWH who underwent MJP is described, subdivided into combinations of joints. For these subgroups, the number of days in hospital, complications and profile at discharge, as well as a guideline on the clinical rehabilitation, are given. It contains a general part and a part for each specific subgroup.
Haemophilia 04/2011; 17(6):971-8. · 2.60 Impact Factor
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ABSTRACT: SUMMARY: Exercise programmes for people with haemophilia are usually designed and implemented to help manage the recovery after a haemarthrosis or a muscle bleed, or as a tool to help prevent bleeding episodes from occurring. In this article, we have identified individual components of exercise that are often applied as separate entities, but may also need to be implemented in concert for optimized impact. Although it may be necessary on occasion to bias an exercise programme towards one component over the others, it is important to recognize that the various elements of exercise are not mutually exclusive. Decreased flexibility, strength and proprioception, will result in an impairment of balance and a loss of function. Programme design should whenever possible be guided by proven methodology in terms of how each component is incorporated, and more specifically how long to perform the exercise for and how many repetitions should be performed. We recognize, however, that this is not always possible and that there is significant value in drawing from the experience of clinicians with specialized training in the management of haemophilia. In this study, both perspectives are presented, providing reference-based reviews of the mechanics of the various elements of exercise as well as the expert opinions of the authors. Research that has been completed using patients with conditions other than haemophilia may or may not have a direct application with the bleeding disorders population, but the programme design based on principles of tissue healing in addition to disease specific knowledge should be encouraged.
Haemophilia 07/2010; 16 Suppl 5:136-45. · 2.60 Impact Factor
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ABSTRACT: As haemophilic arthropathy and chronic synovitis are still the most important clinical features in people with haemophilia, different kinds of invasive and orthopaedic procedures have become more common during the last decades. The availability of clotting factor has made arthroplasty of one, or even multiple joints possible. This article highlights the role of physiotherapy before and after such procedures. Synovectomies are sometimes advocated in people with haemophilia to stop repetitive cycles of intra-articular bleeds and/or chronic synovitis. The synovectomy itself, however, does not solve the muscle atrophy, loss of range of motion (ROM), instability and poor propriocepsis, often developed during many years. The key is in taking advantage of the subsequent, relatively safe, bleed-free period to address these important issues. Although the preoperative ROM is the most important variable influencing the postoperative ROM after total knee arthroplasty, there are a few key points that should be considered to improve the outcome. Early mobilization, either manual or by means of a continuous passive mobilization machine, can be an optimal solution during the very first postoperative days. Muscle isometric contractions and light open kinetic chain exercises should also be started in order to restore the quadriceps control. Partial weight bearing can be started shortly after, because of quadriceps inhibition and to avoid excessive swelling. The use of continuous clotting factor replacement permits earlier and intensive rehabilitation during the postoperative period. During the rehabilitation of shoulder arthroplasty restoring the function of the rotator cuff is of utmost importance. Often the rotator cuff muscles are inhibited in the presence of pain and loss of ROM. Physiotherapy also assists in improving pain and maintaining ROM and strength. Functional weight-bearing tasks, such as using the upper limbs to sit and stand, are often discouraged during the first 6 weeks postoperatively. This may be influenced by the condition of the joints of the lower limbs. Attention should be given to the total chain of motion, of which the shoulder itself is only a part. We conclude that physiotherapy management is of major importance in any invasive or orthopaedic procedure, regardless of which joints are involved. Both pre- and postoperative physiotherapy, as part of comprehensive care is needed to achieve optimal functional outcome and therefore optimal quality of life for people with haemophilia.
Haemophilia 08/2006; 12 Suppl 3:108-12. · 2.60 Impact Factor
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K Beeton, P De Kleijn,
P Hilliard,
S Funk,
N Zourikian,
B-M Bergstrom,
R H H Engelbert,
J J Van Der Net,
M J Manco-Johnson,
P Petrini, [......],
B Lundin,
P M Poonnoose,
J A John,
M L Kavitha,
S M Padankatti,
M Devadarasini,
D Pazani,
A Srivastava,
F R Van Genderen,
R Vachalathiti
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ABSTRACT: Assessment of impairment and function is essential in order to monitor joint status and evaluate therapeutic interventions in patients with haemophilia. The improvements in the treatment of haemophilia have required the development of more sensitive tools to detect the more minor dysfunctions that may now be apparent. This paper outlines some of the recent developments in this field. The Haemophilia Joint Health Score (HJHS) provides a systematic and robust measure of joint impairment. The MRI Scoring System has been designed to provide a comprehensive scoring system combining both progressive and additive scales. The Functional Independence Score for Haemophilia (FISH) has been developed to assess performance of functional activities and can be used in conjunction with the Haemophilia Activities List (HAL) which provides a self report measure of function. It is recommended that both measures are evaluated as these tools measure different constructs. Further refinement and testing of the psychometric properties of all of these tools is in progress. More widespread use of these tools will enable the sharing of data across the world so promoting best practice and ultimately enhancing patient care.
Haemophilia 08/2006; 12 Suppl 3:102-7. · 2.60 Impact Factor
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ABSTRACT: Patients with severe haemophilia often experience pain caused by haemophilic arthropathy, and it is known that pain acts as a predictor of disability. The role of pain in functional limitations in these patients, however, has not been systematically investigated. The aim of this study was to describe pain as experienced by patients with haemophilia and to address the role of pain in subsequent functional limitations. Seventy-eight adult patients (18-70 years) with severe haemophilia completed one questionnaire on pain and one on self-perceived functional abilities. Two-thirds of the patients suffered from more than one painful joint, the ankle being mentioned most frequently (n=43). Analgesics were used by 36% of the patients indicating having pain. Six of 10 most frequently mentioned pain descriptors were of evaluative nature. Evaluative qualities of pain were associated with pain intensity, which in turn was associated with the impact of pain on daily life. Pain outcomes, after adjusting for age and treatment modality, explained 3-22% of the variance in self-perceived functional abilities. Data on radiological joint damage (Pettersson scores) were retrieved for a subgroup of 28 younger patients on prophylaxis and no significant correlations with pain parameters were found. Over two-thirds of the patients with severe haemophilia had one or more painful joints. Pain plays a small, but significant role in functional limitations. In the identified subgroup, arthropathy, as measured by the Pettersson score, seemed to have no role in pain experience. Promoting analgesic use might decrease the impact of pain on functional limitations.
Haemophilia 04/2006; 12(2):147-53. · 2.60 Impact Factor
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ABSTRACT: Recently, the Haemophilia Activities List (HAL), a haemophilia-specific self-assessment questionnaire to assess a patient's self-perceived functional ability, was introduced and a limited pilot study warranted its further development. The present study finalizes the HAL and assesses the convergent and construct validity, as well as the internal consistency of its definitive version. Three questionnaires (HAL, Dutch-Arthritis Impact Measurement Scales 2 and the Impact on Participation and Autonomy questionnaire) were completed by 127 patients with severe haemophilia (<1% clotting activity), as well as four performance tests (button test, 50 metre walking test, timed-up-and-go test and figure-8 walking test). After removal of 15 non-informative items from the provisional HAL, three components within the questionnaire were identified (upper extremity activities, basic lower extremity activities and complex lower extremity activities). The internal consistency of these components was high (Cronbach's alpha = 0.93-0.95), as was internal consistency for the seven domains of the HAL (alpha = 0.61-0.96). The convergent validity of the HAL when compared to the other two questionnaires was good (r = 0.47-0.84). The construct validity of the HAL when compared to the four performance tests was generally lower (r = 0.23-0.77). The final version of the HAL has good internal consistency and convergent validity and gives the clinician insight into a patient's self-perceived ability to perform activities of daily life. It is likely that self-assessment instruments (questionnaires) and performance tests consider different concepts of functional health status and it is therefore recommended that both types are included when clinicians assess a patient's functional abilities.
Haemophilia 02/2006; 12(1):36-46. · 2.60 Impact Factor
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ABSTRACT: People with haemophilia experience a progressive deterioration of their functional health status. Regular clinical assessment of functional health status provides insight into their process of disablement. As such, the development of a core-set of measurement tools is warranted. The aim of this study was to gather data to prepare a (preliminary) core set of clinically relevant and feasible instruments to assess the functional health status of adults with haemophilia, and to indicate their psychometric qualities. Therefore, clinimetric instruments frequently used in two haemophilia-resembling diseases (Rheumatoid Arthritis and Osteoarthritis) were reviewed from the literature. An extensive search in Medline yielded 13 relevant review articles, incorporating a total of 182 instruments, of which 40 were appropriate for haemophilia. Of these 40 instruments 3 measure body structures, 13 body functions, 19 activities (of which 5 are performance based and 14 self-report based), and 3 measure participation. This classification is based on the International Classification of Functioning, Disability and Health. Detailed information regarding the psychometrics (reliability, validity and responsiveness) of four instruments is described fully in the literature, whereas the psychometrics of the majority of the other instruments are only partly described. The results of this literature study may contribute to the formation of a (preliminary) core set of clinimetric instruments to assess the functional health status of adults with haemophilia. Decisions on the final core set should be held within the Musculoskeletal Committee of the World Federation of Haemophilia.
Haemophilia 08/2005; 11(4):308-18. · 2.60 Impact Factor
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ABSTRACT: Haemophilia is characterized by intra-articular and intramuscular bleeding episodes. Although much work has been carried out into post-bleeding mechanisms in both synovial joints and muscles, the picture is not yet clear. A firm post-bleeding rehabilitation protocol is of utmost importance for people with haemophilia. The use of the International Classification of Functioning Disability and Health reveals that information worldwide is on body level, whereas the goals of patients with haemophilia implicitly aim at optimal functional recovery. This interferes much more with activities and participation in society. The Functional Independence Score for Haemophilia and the Post-bleeding Protocol Based on Functional Milestones are examples of post-bleeding approaches that deal more with function. Two cases will emphasize the value of this approach.
Haemophilia 11/2004; 10 Suppl 4:157-60. · 2.60 Impact Factor
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ABSTRACT: Several instruments can be used to evaluate the functional status of patients with haemophilia, but none of these instruments is specific for haemophilia. We developed a haemophilia-specific self-assessment questionnaire to evaluate and monitor a patient's perceived functional health status: the Haemophilia Activities List (HAL). In three separate but interlinked substudies, the questionnaire was constructed and tested for face, expert, and convergent validity, as well as internal consistency and patient-evaluated relevance. Items for the questionnaire were collected by interviewing 162 patients, using the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR). The items were combined to generate the first version of the questionnaire [HAL(1)]. This version was evaluated and commented on by two focus groups (patients and caregivers), and then the questionnaire was adapted on the basis of these comments, forming the final version, HAL(2). This version was then validated in a pilot study with 50 consecutive patients using the Dutch Arthritis Impact Measurements Scales 2 (Dutch-AIMS2) and the Impact on Participation and Autonomy (IPA) questionnaires. The HAL(2) showed good convergent validity (Pearson correlation 0.80-0.91; P < 0.01), and the internal consistency was good for six of the eight domains (Cronbach's alpha 0.83-0.95). Patients considered the content of the HAL to be more relevant to their situation than the content of the other questionnaires (P < 0.01). Three major factors (upper extremity function, lower extremity function, key activities/major problem activities) were identified by factor analysis. The questionnaire seems to be a useful tool to identify problematic activities as part of the functional health status of patients with haemophilia. The construct validity, test-retest reliability, and responsiveness of the HAL will be established in the future.
Haemophilia 10/2004; 10(5):565-71. · 2.60 Impact Factor
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ABSTRACT: A multicentre study was performed to compare clotting factor use and outcome between on-demand and prophylactic treatment strategies for patients with severe haemophilia. Data on treatment and outcome of 49 Dutch patients with severe haemophilia, born 1970-80, primarily treated with prophylaxis, were compared with those of 106 French patients, who were primarily treated on demand. Dutch patients received intermediate dose prophylaxis, for a median duration of 12.7 years. Patients primarily treated with prophylaxis had fewer joint bleeds per year (median 2.8 vs. 11.5), a higher proportion of patients without joint bleeds (29% vs. 9%), lower clinical scores (median 2.0 vs. 8.0), and less arthropathy as measured by the Pettersson score (median 7 points vs. 16 points). Mean annual clotting factor use was equal at 1,488 +/- 783 IU kg-1 year-1 (mean +/- standard deviation) for patients primarily treated with prophylaxis and 1,612 +/- 1,442 IU kg-1 year-1 for patients primarily treated on demand. These findings suggest that, compared with a primarily on-demand treatment strategy, a primarily prophylactic treatment strategy leads to better outcome at equal treatment costs in young adults with severe haemophilia.
Haemophilia 12/2002; 8(6):745-52. · 2.60 Impact Factor
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ABSTRACT: The World Federation of Hemophilia scoring system (WFH-1) evaluates primarily body functions and structures, whereas assessment of the whole area of functional health status is considered nowadays to be a better measure. In addition, the WFH-1 lacks psychometric properties (reliability, validity and sensitivity to change). This study aimed to gain insight into the clinimetric assessment of functional health status in patients with haemophilia by way of a systematic literature search. A standardized literature search and selection was performed on the databases of CINAHL (1982-2001), Medline (1966-2001), and PubMed (January-July 2001). Clinimetric instruments applied in the selected articles were classified based on the international classification of functioning, disability, and health (ICF) and analysed for their psychometric properties. In 19 articles published between 1979 and 2001, 34 clinimetric instruments were used to assess functional health status. Instruments were classified as measuring the ICF components body structure and function (n = 17), activities (12) and participation (4). Reliability was measured in four articles on three different instruments, the validity (construct) of the instruments for patients with haemophilia was reported in six articles on five instruments, and sensitivity to change in three articles on three instruments. The populations under study varied in number (7-9 35), mean age (21.6-50.8 years), and in the distribution of haemophilia severity. Reports on the evaluation of functional health status in patients with haemophilia are increasing. Further research on the psychometric properties of the instruments is warranted in more groups of patients with haemophilia. Development of the new core set of clinimetric instruments, the WFH-2, might benefit from this strategy.
Haemophilia 06/2002; 8(3):419-27. · 2.60 Impact Factor
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ABSTRACT: The demand for patient information in modern medical care is increasing and sound information for patients is becoming a necessity. For haemophilia patients, information about their disease and its complications is already widely available. In order to increase the organization of this information, a 'Patient Information Dossier' (PID) and communication check lists were developed at the Dutch National Hemophilia Center, the Van Creveldkliniek, in cooperation with the Department of Patient Education of the University Medical Center Utrecht. The PID has an unique double function: (1) it contains patient tailored information about the practical facts of hospital care; and (2) it provides a communication checklist used by various members of the comprehensive care team, in order to supply patients with more uniform information. In order to gain a better insight of the gaps in information supply, according to patients and healthcare workers, the Department of Patient Education formulated a questionnaire. The PID itself was written by a study group consisting of members of the comprehensive care team. The entire process was developed, edited and coordinated by an advisor of the Department of Patient Education. The above-mentioned study group developed a specific PID on haemophilia care. Its 10 chapters provide information and guidelines, and advise patients where to find more information about this subject. Each chapter includes a checklist for patients, enabling them to prepare subjects for discussion during clinical visits. The team also developed a communication checklist to be used by various team members during a patient's visit to the clinic, as well as specific checklists covering the possible problem subjects of the PID. The PID is the lifelong property of the patient, and can be used during each visit to the clinic. The PID was implemented in February 2000, and within 4 months, was distributed among 200 patients visiting the Van Creveldkliniek. Evaluation by use of a questionnaire showed that most patients found the information in the PID sufficient and in accordance with that which they had received previously.
Haemophilia 08/2001; 7(4):397-400. · 2.60 Impact Factor
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ABSTRACT: The demand for patient information in modern medical care is increasing and sound information for patients is becoming a necessity. For haemophilia patients, information about their disease and its complications is already widely available. In order to increase the organization of this information, a ‘Patient Information Dossier’ (PID) and communication check lists were developed at the Dutch National Hemophilia Center, the Van Creveldkliniek, in cooperation with the Department of Patient Education of the University Medical Center Utrecht. The PID has an unique double function: (1) it contains patient tailored information about the practical facts of hospital care; and (2) it provides a communication checklist used by various members of the comprehensive care team, in order to supply patients with more uniform information. In order to gain a better insight of the gaps in information supply, according to patients and healthcare workers, the Department of Patient Education formulated a questionnaire. The PID itself was written by a study group consisting of members of the comprehensive care team. The entire process was developed, edited and coordinated by an advisor of the Department of Patient Education. The above-mentioned study group developed a specific PID on haemophilia care. Its 10 chapters provide information and guidelines, and advise patients where to find more information about this subject. Each chapter includes a checklist for patients, enabling them to prepare subjects for discussion during clinical visits. The team also developed a communication checklist to be used by various team members during a patient’s visit to the clinic, as well as specific checklists covering the possible problem subjects of the PID. The PID is the lifelong property of the patient, and can be used during each visit to the clinic. The PID was implemented in February 2000, and within 4 months, was distributed among 200 patients visiting the Van Creveldkliniek. Evaluation by use of a questionnaire showed that most patients found the information in the PID sufficient and in accordance with that which they had received previously.
Haemophilia 07/2001; 7(4):397 - 400. · 2.60 Impact Factor
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ABSTRACT: The aim of this study was to investigate the validity of the Dutch Arthritis Impact Measurement Scales 2 (D-AIMS2). Hence, D-AIMS2 data of individuals with severe haemophilia were correlated with clinical and perceived health-related quality of life data. Patients with severe haemophilia, who visit the Van Creveldkliniek on a regular basis, were administered the D-AIMS2. In addition, health-related quality of life was measured by the Sickness Impact Profile (SIP). As clinical indices, range of movement (which was converted into Joint Alignment and Motion scores) and muscle strength were recorded during the routine visit. Extensive descriptive and correlational (linear) analyses between corresponding datasets were performed. Thirty-one individuals with severe haemophilia were included. Their scores on the D-AIMS2 demonstrated moderate to very high internal consistency for scales and components (Cronbach's alpha = 0.62-0.92). The physical health components of the D-AIMS2 and the SIP were significantly correlated (Pearson's r = 0.53; P < 0.05). The psychological health and social interaction components of the D-AIMS2 did not correlate significantly with the psychosocial component of the SIP. The physical health component of the D-AIMS2 correlated significantly with the clinical data for the lower extremities (r = 0.52 and r = -0.45; P < 0.05). These data support the reliability and validity of the physical aspects of the D-AIMS2 in patients with severe haemophilia. The next step should be to extend the investigation of psychometric qualities of this health-related questionnaire in a larger population.
Haemophilia 03/2001; 7(2):190-7. · 2.60 Impact Factor
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ABSTRACT: In order to address the question of the optimum target level for prophylactic treatment of severe haemophilia patients, the association between endogenous clotting factor activity and outcome was studied in a cohort of 46 patients with moderate haemophilia. Data on treatment and outcome were collected annually. Median follow-up was 8.0 years (range 1-26). Median joint bleed frequency was 1 per year and median radiological score according to Pettersson was 1 point (max. 78) at the age of 25 years. One percent increase in clotting factor level was associated with a 4 months later onset of joint bleeds (95% Confidence Interval (CI): 2-6 months) and a 16% lower Pettersson score (95% CI: 3-27%). No statistically significant effect of clotting factor activity on joint bleed frequency could be demonstrated. These findings confirm that patients with moderate haemophilia experience only mild arthropathy, and provide evidence for a protective effect of higher clotting factor levels on joint damage.
Thrombosis and Haemostasis 01/2001; 84(6):977-80. · 5.04 Impact Factor
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ABSTRACT: The aim of this pilot study was to examine the usefulness of the Dutch version of the Arthritis Impact Measurement Scales 2 (D-AIMS2)in assessing the health status of Dutch individuals with haemophilia. Sixty-eight individuals with mild, moderate, and severe haemophilia attending our clinic for their annual check-up participated. They first completed the Canadian Occupational Performance Measure (COPM). The D-AIMS2 was filled in afterwards at home. With the COPM, individuals rated their specific problematic activities of daily life (ADL), as well as the severity and importance of each problem. The D-AIMS2 is a comprehensive, self-administered questionnaire that evaluates functional health status. Fifty-seven individuals completed and returned the D-AIMS2. Reliability analysis demonstrated good internal consistency for the scales (Cronbach's alpha=0.76-1.00), as well as for the components (alpha=0.80-0.88), except for the component 'social interaction' (alpha=0.44). Criterion validity of the D-AIMS2 was assessed by comparison with COPM outcomes; 80% of the problematic ADLs were included in the questionnaire, 20% were missing. Correlations between the D-AIMS2 components 'physical health' and 'symptoms' with predicted scores of those individuals by a highly experienced physiotherapist (r=0.63 and 0.53, respectively) substantiated its concurrent validity. Based on these results we concluded that the D-AIMS2, with minor adjustments, can be an appropriate tool for assessing the health status of Dutch haemophilia patients.
Haemophilia 12/2000; 6(6):664-71. · 2.60 Impact Factor
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ABSTRACT: The aim of this pilot study was to examine the usefulness of the Dutch version of the Arthritis Impact Measurement Scales 2 (D-AIMS2)in assessing the health status of Dutch individuals with haemophilia. Sixty-eight individuals with mild, moderate, and severe haemophilia attending our clinic for their annual check-up participated. They first completed the Canadian Occupational Performance Measure (COPM). The D-AIMS2 was filled in afterwards at home. With the COPM, individuals rated their specific problematic activities of daily life (ADL), as well as the severity and importance of each problem. The D-AIMS2 is a comprehensive, self-administered questionnaire that evaluates functional health status. Fifty-seven individuals completed and returned the D-AIMS2. Reliability analysis demonstrated good internal consistency for the scales (Cronbach’s =0.76–1.00), as well as for the components (=0.80–0.88), except for the component ‘social interaction’ (=0.44). Criterion validity of the D-AIMS2 was assessed by comparison with COPM outcomes; 80% of the problematic ADLs were included in the questionnaire, 20% were missing. Correlations between the D-AIMS2 components ‘physical health’ and ‘symptoms’ with predicted scores of those individuals by a highly experienced physiotherapist (r=0.63 and 0.53, respectively) substantiated its concurrent validity. Based on these results we concluded that the D-AIMS2, with minor adjustments, can be an appropriate tool for assessing the health status of Dutch haemophilia patients.
Haemophilia 10/2000; 6(6):664 - 671. · 2.60 Impact Factor
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ABSTRACT: Articular contractures in haemophilia are impairments that can not be cured by means of physiotherapy because of the pathophysiology of the joint. Rehabilitation, however, tries to diminish the disabilities and prevent handicaps caused by the impairments. Physiotherapy aims at pain reduction by means of manual traction. Next to manual traction the intensive physiotherapy programme includes mobilization techniques, muscle strengthening exercises and stretching, joint stability training, postural and gait, training, and functional training. In all 50 haemophilia patients have undergone this intensive 4-week clinical rehabilitation programme. Data of 20 of these severe haemophilia patients show that the mean range of motion at the start of the rehabilitation period, after 4 weeks and after 5 years do not differ. In spite of progressing arthropathy after 5 years the activities of daily living (ADL), walking range and pain are equal or better according to 13 of 15 patients.
Haemophilia 04/1999; 5 Suppl 1:16-9. · 2.60 Impact Factor
