Differential Performance of SF-36 Items in Healthy Adults With and Without Functional Limitations

Horner‐Johnson, Willi; Krahn, Gloria L.; Suzuki, Rie; Peterson, Jana J.; Roid, Gale H.; Hall, Trevor A.

doi:10.1016/j.apmr.2009.12.015

Cited by 35 publications

(43 citation statements)

References 23 publications

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“…Although recruited from all specialities, from the National Resource Centre, and from the patient union, the sample may be too small to represent all variants of MFS. There is a general discussion about what SF-36 measures and the usefulness of the SF-36 34 ; however, we chose this widely used tool to have comparisons to other well-described cohorts, including the general population. 13 …”

Section: Limitations Of Our Studymentioning

confidence: 99%

Health-related quality of life in Marfan syndrome: A cross-sectional study of Short Form 36 in 84 adults with a verified diagnosis

Rand‐Hendriksen

Johansen

Semb

et al. 2010

Genetics in Medicine

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M arfan syndrome (MFS) is an autosomal dominant connective tissue disorder, with variable pathologic features and symptoms from different organ systems. MFS is diagnosed on the basis of the Ghent criteria, 1 defining "involved organ systems" and "major criteria fulfilled." To be given the diagnosis, a person has to fulfill a major criterion in two different organ systems and have a third organ system involved. Approximately 30% of the cases are the first in their family to have MFS, interpreted as caused by new mutations.The impact of MFS on the individual patient may vary considerably both between families and within a family. As aortic disease may result in early death, some patients will have to cope with an impending life-threatening condition. Lens dislocation can give reduced visual acuity, and lens dislocation increases the risk for retinal detachment that can result in blindness. The consequences of dural ectasia are still unclear 2 ; orthostatic headache due to cerebrospinal hypotension has been found 3,4 ; problems with spinal and epidural anesthesia have been reported. 5 Skeletal abnormalities may include a long, slender body shape, chest deformities, scoliosis, and joint hypermobility and may result in a peculiar appearance that invites unwanted attention. Children with MFS often look older than their chronological age and are often treated in accordance with their appearance, rather than their actual age. Individuals with MFS have been bullied and stigmatized at school, in the local environment, and in their occupational life. 6 Moreover, persons with MFS often report musculoskeletal pain, fatigue, and reduced physical endurance. 7,8 In the clinic, persons with MFS usually report few, if any, physical limitations deriving from their cardiovascular system. On the other hand, physicians often advise abstinence from strenuous exercise and prescribe beta-blockers to reduce the aortic dP/dt, heart rate, blood pressure, and left ventricular afterload, with the intention to delay aortic dilatation and lower the risk of aortic dissection. Some patients undergo prophylactic elective graft operations for enlarged aortas. Through such measures, the median life expectancy of persons with MFS has been prolonged considerably. 9 To reduce the risk of aortic dissection, lens dislocation, and retinal detachment, the patients are advised not to participate in contact sports and to wear glasses during sports with small balls. It is our clinical experience that the advised restrictions have often resulted in passivity; a sedentary life with an increasing body size.Given the broad range of symptoms and characteristics among individuals with MFS, as mentioned earlier, one would expect a reduced health-related quality of life (HRQOL). Judging from the MFS literature, where the main focus is on aortic pathology, the severity of aortic disease could potentially be the most important predictor for the degree of reduction. There are, however, few studies of HRQOL in the literature on MFS. In a study of 174 adults with MFS, Pe...

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Section: Limitations Of Our Studymentioning

confidence: 99%

Health-related quality of life in Marfan syndrome: A cross-sectional study of Short Form 36 in 84 adults with a verified diagnosis

Rand‐Hendriksen

Johansen

Semb

et al. 2010

Genetics in Medicine

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“…Items for the pool demonstrated relative statistical functional neutrality, in contrast with items of the Short FormY36 that have demonstrated substantial functional penalty for people with preexisting functional limitations. 24 Development of the measure was informed by the International Classification of Functioning, Disability and Health framework, 15 which addresses barriers and supports in the environment. An advantage of the FuNHRQOL is inclusion of the environment scale to provide a means of measuring the respondent's perception of the environment as supporting or hindering HRQOL.…”

Section: Discussionmentioning

confidence: 99%

“…1,11,24 This work was conducted before release of the recommendations for scale development in rehabilitation 50 but closely parallels those recommended steps. The rigorous process of instrument development is reflected in its strong psychometric properties.…”

Section: Discussionmentioning

confidence: 99%

“…First, the conflation of function with HRQOL results in a Bfunctional penalty[ of unknown magnitude for persons with different types of functional limitations. 12 Horner-Johnson and colleagues 24 illustrated this for the Short FormY36, used with people with various functional impairments. Second, inclusion of items that are not sensitive to change (e.g., ability to walk for persons with lower limb paralysis) makes these measures less useful for assessing impact of interventions.…”

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confidence: 98%

“…However, common measures of HRQOL that include assessment of function would yield lower scores for persons with disabilities solely because of their functional limitations. 24 The problems with using current HRQOL measures in people with functional limitations are substantial. 12,25 Using established criteria, 26 Andresen and Meyers 27 reviewed eight of the most popular HRQOL measures and concluded that none of them were free of bias with respect to people with disabilities.…”

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confidence: 99%

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Development and Psychometric Assessment of the Function-Neutral Health-Related Quality of Life Measure

Krahn

Horner‐Johnson

Hall

et al. 2014

American Journal of Physical Medicine &Amp; Rehabilitation

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Long‐term functional and mobility outcomes for individuals with arthrogryposis multiplex congenita

Nouraei

Sawatzky

MacGillivray

et al. 2017

American J of Med Genetics Pt A

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Arthrogryposis multiplex congenita (AMC) is a birth defect that involves congenital joint contractures in two or more joints including the limbs, spine, and jaw. The purpose of our study was to identify long-term outcomes of adults with AMC. We recruited 177 participants from over 15 countries, making this the largest international study of adults with AMC. Participants provided demographic information including living situation and mobility and completed two standardized outcome measures, of quality of life and physical activity, using an online survey format. The data were compiled and descriptive analyses were performed. The study group consisted of 72% females and a mean age of 39 years. Over 90% of participants had upper and lower limb involvement, 35% had scoliosis or lordosis while 16% had jaw problems. Participants had an average of nine (0-70) surgeries at the time of the study. The majority (75%) of respondents lived independently of family members (on their own or with a partner). Participants were nearly three times more likely to have a graduate degree than the general US population. Participants reported lower physical function scores than the general US population; however, they reported similar or higher scores for the other quality of life domains of the SF-36. They were considerably less physically active than able-bodied individuals. Half of participants experienced chronic back pain and 60% reported joint pain. Additionally, almost half of the participants took regular pain medications.

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Differential Performance of SF-36 Items in Healthy Adults With and Without Functional Limitations

Cited by 35 publications

References 23 publications

Health-related quality of life in Marfan syndrome: A cross-sectional study of Short Form 36 in 84 adults with a verified diagnosis

Health-related quality of life in Marfan syndrome: A cross-sectional study of Short Form 36 in 84 adults with a verified diagnosis

Development and Psychometric Assessment of the Function-Neutral Health-Related Quality of Life Measure

Long‐term functional and mobility outcomes for individuals with arthrogryposis multiplex congenita

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