Living with joint hypermobility syndrome: Patient experiences of diagnosis, referral and self-care

Authors: Terry, R.H., Palmer, S.T., Rimes, K.A., Clark, C.J., Simmonds, J.V. and Horwood, J.P.

Journal: Family Practice

Volume: 32

Issue: 3

Pages: 354-358

eISSN: 1460-2229

ISSN: 0263-2136

DOI: 10.1093/fampra/cmv026

Abstract:

Background. Musculoskeletal problems are common reasons for seeking primary health care. It has been suggested that many people with 'everyday' non-inflammatory musculoskeletal problems may have undiagnosed joint hypermobility syndrome (JHS), a complex multi-systemic condition. JHS is characterized by joint laxity, pain, fatigue and a wide range of other symptoms. Physiotherapy is usually the preferred treatment option for JHS, although diagnosis can be difficult. The lived experience of those with JHS requires investigation. Objective. The aim of the study was to examine patients' lived experience of JHS, their views and experiences of JHS diagnosis and management. Methods. Focus groups in four locations in the UK were convened, involving 25 participants with a prior diagnosis of JHS. The focus groups were audio recorded, fully transcribed and analysed using the constant comparative method to inductively derive a thematic account of the data. Results. Pain, fatigue, proprioception difficulties and repeated cycles of injury were among the most challenging features of living with JHS. Participants perceived a lack of awareness of JHS from health professionals and more widely in society and described how diagnosis and access to appropriate health-care services was often slow and convoluted. Education for patients and health professionals was considered to be essential. Conclusions. Timely diagnosis, raising awareness and access to health professionals who understand JHS may be particularly instrumental in helping to ameliorate symptoms and help patients to self-manage their condition. Physiotherapists and other health professionals should receive training to provide biopsychosocial support for people with this condition.

http://eprints.bournemouth.ac.uk/30064/

Source: Scopus

Living with joint hypermobility syndrome: patient experiences of diagnosis, referral and self-care.

Authors: Terry, R.H., Palmer, S.T., Rimes, K.A., Clark, C.J., Simmonds, J.V. and Horwood, J.P.

Journal: Fam Pract

Volume: 32

Issue: 3

Pages: 354-358

eISSN: 1460-2229

DOI: 10.1093/fampra/cmv026

Abstract:

BACKGROUND: Musculoskeletal problems are common reasons for seeking primary health care. It has been suggested that many people with 'everyday' non-inflammatory musculoskeletal problems may have undiagnosed joint hypermobility syndrome (JHS), a complex multi-systemic condition. JHS is characterized by joint laxity, pain, fatigue and a wide range of other symptoms. Physiotherapy is usually the preferred treatment option for JHS, although diagnosis can be difficult. The lived experience of those with JHS requires investigation. OBJECTIVE: The aim of the study was to examine patients' lived experience of JHS, their views and experiences of JHS diagnosis and management. METHODS: Focus groups in four locations in the UK were convened, involving 25 participants with a prior diagnosis of JHS. The focus groups were audio recorded, fully transcribed and analysed using the constant comparative method to inductively derive a thematic account of the data. RESULTS: Pain, fatigue, proprioception difficulties and repeated cycles of injury were among the most challenging features of living with JHS. Participants perceived a lack of awareness of JHS from health professionals and more widely in society and described how diagnosis and access to appropriate health-care services was often slow and convoluted. Education for patients and health professionals was considered to be essential. CONCLUSIONS: Timely diagnosis, raising awareness and access to health professionals who understand JHS may be particularly instrumental in helping to ameliorate symptoms and help patients to self-manage their condition. Physiotherapists and other health professionals should receive training to provide biopsychosocial support for people with this condition.

http://eprints.bournemouth.ac.uk/30064/

Source: PubMed

Living with joint hypermobility syndrome: patient experiences of diagnosis, referral and self-care

Authors: Terry, R.H., Palmer, S.T., Rimes, K.A., Clark, C.J., Simmonds, J.V. and Horwood, J.P.

Journal: FAMILY PRACTICE

Volume: 32

Issue: 3

Pages: 354-358

eISSN: 1460-2229

ISSN: 0263-2136

DOI: 10.1093/fampra/cmv026

http://eprints.bournemouth.ac.uk/30064/

Source: Web of Science (Lite)

Living with joint hypermobility syndrome: patient experiences of diagnosis, referral and self-care.

Authors: Terry, R.H., Palmer, S.T., Rimes, K.A., Clark, C.J., Simmonds, J.V. and Horwood, J.P.

Journal: Family practice

Volume: 32

Issue: 3

Pages: 354-358

eISSN: 1460-2229

ISSN: 0263-2136

DOI: 10.1093/fampra/cmv026

Abstract:

Background

Musculoskeletal problems are common reasons for seeking primary health care. It has been suggested that many people with 'everyday' non-inflammatory musculoskeletal problems may have undiagnosed joint hypermobility syndrome (JHS), a complex multi-systemic condition. JHS is characterized by joint laxity, pain, fatigue and a wide range of other symptoms. Physiotherapy is usually the preferred treatment option for JHS, although diagnosis can be difficult. The lived experience of those with JHS requires investigation.

Objective

The aim of the study was to examine patients' lived experience of JHS, their views and experiences of JHS diagnosis and management.

Methods

Focus groups in four locations in the UK were convened, involving 25 participants with a prior diagnosis of JHS. The focus groups were audio recorded, fully transcribed and analysed using the constant comparative method to inductively derive a thematic account of the data.

Results

Pain, fatigue, proprioception difficulties and repeated cycles of injury were among the most challenging features of living with JHS. Participants perceived a lack of awareness of JHS from health professionals and more widely in society and described how diagnosis and access to appropriate health-care services was often slow and convoluted. Education for patients and health professionals was considered to be essential.

Conclusions

Timely diagnosis, raising awareness and access to health professionals who understand JHS may be particularly instrumental in helping to ameliorate symptoms and help patients to self-manage their condition. Physiotherapists and other health professionals should receive training to provide biopsychosocial support for people with this condition.

http://eprints.bournemouth.ac.uk/30064/

Source: Europe PubMed Central

Living with joint hypermobility syndrome: patient experiences of diagnosis, referral and self-care.

Authors: Terry, R.H., Palmer, S.T., Rimes, K.A., Clark, C.J., Simmonds, J.V. and Horwood, J.P.

Journal: Family Practice

Volume: 32

Issue: 3

Pages: 354-358

ISSN: 0263-2136

Abstract:

BACKGROUND: Musculoskeletal problems are common reasons for seeking primary health care. It has been suggested that many people with 'everyday' non-inflammatory musculoskeletal problems may have undiagnosed joint hypermobility syndrome (JHS), a complex multi-systemic condition. JHS is characterized by joint laxity, pain, fatigue and a wide range of other symptoms. Physiotherapy is usually the preferred treatment option for JHS, although diagnosis can be difficult. The lived experience of those with JHS requires investigation. OBJECTIVE: The aim of the study was to examine patients' lived experience of JHS, their views and experiences of JHS diagnosis and management. METHODS: Focus groups in four locations in the UK were convened, involving 25 participants with a prior diagnosis of JHS. The focus groups were audio recorded, fully transcribed and analysed using the constant comparative method to inductively derive a thematic account of the data. RESULTS: Pain, fatigue, proprioception difficulties and repeated cycles of injury were among the most challenging features of living with JHS. Participants perceived a lack of awareness of JHS from health professionals and more widely in society and described how diagnosis and access to appropriate health-care services was often slow and convoluted. Education for patients and health professionals was considered to be essential. CONCLUSIONS: Timely diagnosis, raising awareness and access to health professionals who understand JHS may be particularly instrumental in helping to ameliorate symptoms and help patients to self-manage their condition. Physiotherapists and other health professionals should receive training to provide biopsychosocial support for people with this condition.

http://eprints.bournemouth.ac.uk/30064/

Source: BURO EPrints