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1.
J Clin Rheumatol ; 28(6): 314-320, 2022 Sep 01.
Article in English | MEDLINE | ID: mdl-35661088

ABSTRACT

ABSTRACT: There is exponential clinical and research interest in joint hypermobility due to recognition of the complexity of identification, assessment, and its appropriate referral pathways, ultimately impacting management. This state-of-the-science review provides an international, multidisciplinary perspective on the presentation, etiology, and assessment of joint hypermobility, as it presents in those with and without a systemic condition. We synthesize the literature, propose standardizing the use of terminology and outcome measures, and suggest potential management directions. The major topics covered are (i) historical perspectives; (ii) current definitions of hypermobility, laxity, and instability; (iii) inheritance and acquisition of hypermobility; (iv) traditional and novel assessments; (v) strengths and limitations of current assessment tools; (vi) age, sex, and racial considerations; (vii) phenotypic presentations; (viii) generalized hypermobility spectrum disorder and hypermobility Ehlers-Danlos syndrome; and (ix) clinical implications and research directions. A thorough understanding of these topics will equip the reader seeking to manage individuals presenting with joint hypermobility, while mindful of its etiology. Management of generalized joint hypermobility in the context of a complex, multisystem condition will differ from that of acquired hypermobility commonly seen in performing artists, specific athletic populations, posttrauma, and so on. In addition, people with symptomatic hypermobility present predominantly with musculoskeletal symptoms and sometimes systemic symptoms including fatigue, orthostatic intolerance, and gastrointestinal or genitourinary issues. Some also display skeletal deformities, tissue and skin fragility, and structural vascular or cardiac differences, and these warrant further medical follow-up. This comprehensive review on the full spectrum of joint hypermobility will assist clinicians, coaches/sports trainers, educators, and/or researchers in this area.


Subject(s)
Ehlers-Danlos Syndrome , Joint Instability , Fatigue , Humans , Internationality
2.
Am J Med Genet C Semin Med Genet ; 187(4): 453-457, 2021 12.
Article in English | MEDLINE | ID: mdl-34741798

ABSTRACT

There has been increasing recognition in recent years of the prevalence and impact of symptoms which extend beyond the musculoskeletal system on the lives of people with hypermobility-related disorders. This has led researchers to develop more comprehensive assessment tools to help direct and monitor treatment. This article presents some of the latest assessment and diagnostic developments and their implications for practice from a physical therapy perspective.


Subject(s)
Ehlers-Danlos Syndrome , Joint Instability , Databases, Genetic , Humans , Joint Instability/diagnosis , Physical Therapy Modalities , Prevalence
3.
Am J Med Genet C Semin Med Genet ; 187(4): 586-592, 2021 12.
Article in English | MEDLINE | ID: mdl-34845822

ABSTRACT

Children with symptomatic joint hypermobility (SJH) report chronic pain, fatigue, and joint instability as their main symptoms. Symptoms can extend beyond musculoskeletal and include lower urinary tract dysfunction (LUTD). There are no studies exploring parent-perceived quality of life (QoL) in children with LUTD, or strategies used to manage symptoms in this population. Our online cross-sectional survey assessed parents of 6-18-year-olds via two UK charitable organizations. It included the Pediatric Incontinence Questionnaire (PinQ), the Dysfunctional Voiding Symptom Score, and questions exploring treatments and efficacy. Sixty-seven parental questionnaires were analyzed. The majority of children were white females (95%, n = 64). Urgency (97%, n = 65) and enuresis (41.7%, n = 28) were the most frequently reported symptoms. The PinQ questionnaire showed that children were emotionally distressed by LUTD. Twenty-nine parents (43%, n = 29) reported pharmacotherapy as the most effective treatment. Few had accessed other treatments such as physiotherapy (16%, n = 18). Most parents reported that overall treatment did not meet their expectations. This study highlights that parents perceive LUTD as having a great impact on their child's QoL. There is need for education among clinicians about LUTD and hypermobility-related disorders, and for development and evaluation of treatments.


Subject(s)
Joint Instability , Lower Urinary Tract Symptoms , Child , Cross-Sectional Studies , Female , Humans , Parents , Quality of Life , Surveys and Questionnaires , Urinary Bladder
4.
BMC Public Health ; 21(1): 470, 2021 03 09.
Article in English | MEDLINE | ID: mdl-33750336

ABSTRACT

BACKGROUND: Sexual reproductive health communication between parents and children has been shown to promote safer sexual choices. In many South African households, third-generation female caregivers, often grandmothers or other older females, locally known as gogos, are primary caregivers of children due to parents being deceased or absent. Subsequently, the responsibility of talking about sex and related issues has shifted to these gogos. This study explored the experiences of gogos living in Alexandra, Johannesburg on talking about sex, sexuality and HIV and AIDS with children aged 10-18 years that are in their care. METHODS: Ten primary caregivers were purposively selected. Data were collected through in-depth individual interviews. Thematic analysis was performed and inductive codes and themes identified. RESULTS: All gogos selected found it difficult to discuss sex, sexuality and HIV and AIDS due to culture and traditional values impacting on personal experiences as well as generation and gender barriers. Perceived low self-efficacy due to low levels of knowledge and limited skills in speaking about sex, sexuality and HIV and AIDS also contributed to low levels of sexual reproductive health communication. CONCLUSIONS: This study highlights the need for interventions that focus on improving gogos' knowledge about sexual reproductive health in addition to providing them with the skills to talk about sex, sexuality and HIV and AIDS with children in their care.


Subject(s)
Caregivers , HIV Infections , Adolescent , Child , Female , Health Knowledge, Attitudes, Practice , Humans , Sexual Behavior , Sexuality , South Africa
5.
Child Care Health Dev ; 46(3): 310-319, 2020 05.
Article in English | MEDLINE | ID: mdl-31957909

ABSTRACT

BACKGROUND: Idiopathic toe walking (ITW) is an exclusionary diagnosis resulting in a child walking on the balls of their feet. Preferred treatment options may be due to the severity of the toe or the health professional preference There are limited guidelines supporting consistent treatment recommendations for this condition. This research aimed to understand agreement between health professionals' knowledge of evidence for common treatment strategies for ITW and if health professionals supported these strategies being used in clinical practice. METHODS: An international online survey was opened to registered health professionals who treat children with ITW between July 2017 and March 2018. The survey had two components: (a) demographic variables and variables relating to knowledge of evidence about ITW treatments and (b) support for common treatment strategies. Additional data on strategy use, referrals, and preference were collected. Kappa statistics described intra-rater agreement between evidence knowledge and support. Multivariable regression analyses identified factors associated with the 10 most commonly preferred treatments. RESULTS: There were 908 international responses. Kappa agreement for paired correct responses determined a fair agreement for evidence support knowledge for four strategies including watch and wait (Kappa = 0.24), stretching (Kappa = 0.30), sensory integration strategies (Kappa = 0.40), and motor control strategies (Kappa = 0.24) and moderate responses for 13 others. No strategies had greater than moderate agreement between correct knowledge of evidence and strategy support. Profession, location, number of children seen in practice, and not correctly identifying the evidence factored into many of the most commonly used strategies for ITW (p < .05). CONCLUSIONS: The results from this study, which confirm a variety of interventions, are utilized in the management of ITW around the world. Furthermore, there remains a disconnection between paediatric health professionals' understanding of the evidence of common treatment strategies of ITW and a consensus for the treatment of this condition.


Subject(s)
Clinical Competence , Evidence-Based Practice , Gait/physiology , Pediatrics , Toes , Child , Child, Preschool , Female , Humans , Male , Orthopedic Procedures , Orthotic Devices , Physical Therapy Modalities , Practice Patterns, Physicians' , Surveys and Questionnaires
6.
Am J Med Genet C Semin Med Genet ; 175(1): 158-167, 2017 03.
Article in English | MEDLINE | ID: mdl-28306230

ABSTRACT

New insights into the phenotype of Joint Hypermobility Syndrome (JHS) and Ehlers-Danlos Syndrome-hypermobile type (hEDS) have raised many issues in relation to classification, diagnosis, assessment, and treatment. Within the multidisciplinary team, physical therapy plays a central role in management of individuals with hypermobility related disorders. However, many physical therapists are not familiar with the diagnostic criteria, prevalence, common clinical presentation, and management. This guideline aims to provide practitioners with the state of the art regarding the assessment and management of children, adolescents, and adults with JHS/hEDS. Due to the complexity of the symptoms in the profile of JHS/hEDS, the International Classification of Functioning, Disability and Health (ICF) is adopted as a central framework whereby the umbrella term of disability is used to encompass functions, activities and participation, as well as environmental and personal factors. The current evidence-based literature regarding the management of JHS/hEDS is limited in size and quality and there is insufficient research exploring the clinical outcomes of a number of interventions. Multicenter randomized controlled trials are warranted to assess the clinical and cost-effectiveness of interventions for children and adults. Until further multicenter trials are conducted, clinical decision-making should be based on theoretical and the current limited research evidence. For all individuals diagnosed with JHS/hEDS, international consensus and combined efforts to identify risk profiles would create a better understanding of the pathological mechanisms and the potential for optimizing health care for affected individuals. © 2017 Wiley Periodicals, Inc.


Subject(s)
Ehlers-Danlos Syndrome/therapy , Joint Instability/therapy , Physical Therapy Modalities , Adolescent , Adult , Child , Ehlers-Danlos Syndrome/diagnosis , Ehlers-Danlos Syndrome/rehabilitation , Humans , Joint Instability/diagnosis , Joint Instability/rehabilitation , Practice Guidelines as Topic
7.
Am J Med Genet C Semin Med Genet ; 169C(1): 76-83, 2015 Mar.
Article in English | MEDLINE | ID: mdl-25821093

ABSTRACT

Physiotherapy plays a fundamental role in managing adults with the joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type (JHS/EDS-HT). However, it is a challenge for both the patient and the physiotherapist as the condition is poorly understood and treatment for JHS/EDS-HT is currently undefined. Insight into current practice is, therefore, necessary in order to establish baseline knowledge in this area and in the long term to improve the standard of patient care. Therefore, the purpose of this study was to evaluate current physiotherapists' knowledge of JHS/EDS-HT and to gain insight into current physiotherapy practice with emphasis on assessment, management, and treatment efficacy. Three hundred twenty-five Flemish physiotherapists participated in the study by filling out electronically a modified version of the "Hypermobility and Hypermobility Syndrome Questionnaire" (HHQ), which covered theoretical constructs such as general knowledge, assessment, management, and learning in relation to generalized joint hypermobility and JHS/EDS-HT. The results show that physiotherapists report a low level of confidence with regard to assessment and management of JHS/EDS-HT. Knowledge of hypermobility and JHS/EDS-HT is weak, especially regarding the features associated with JHS/EDS-HT. Many treatment approaches are used by physiotherapists with the majority showing preference for education, reassurance, muscle strengthening, proprioceptive and core stability training. Almost all approaches were perceived as being clinically effective by the physiotherapists, highlighting a lack of consensus. In conclusion, this study in Flemish physiotherapists confirms that JHS/EDS-HT is under-recognized, not well known and deemed difficult to treat. Further education is required and sought by the physiotherapists surveyed, and future research is needed.


Subject(s)
Ehlers-Danlos Syndrome/epidemiology , Health Knowledge, Attitudes, Practice , Joint Instability/congenital , Physical Therapists/education , Adult , Ehlers-Danlos Syndrome/physiopathology , Female , Humans , Joint Instability/epidemiology , Joint Instability/physiopathology , Male , Middle Aged , Surveys and Questionnaires
8.
Fam Pract ; 32(3): 354-8, 2015 Jun.
Article in English | MEDLINE | ID: mdl-25911504

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.


Subject(s)
Ehlers-Danlos Syndrome/physiopathology , Health Knowledge, Attitudes, Practice , Health Personnel/education , Health Services Accessibility , Joint Instability/congenital , Adolescent , Adult , Ehlers-Danlos Syndrome/classification , Ehlers-Danlos Syndrome/psychology , Fatigue/etiology , Female , Focus Groups , Humans , Joint Instability/diagnosis , Joint Instability/physiopathology , Joint Instability/psychology , Male , Middle Aged , Pain/etiology , Physical Therapy Modalities , Proprioception , Qualitative Research , Self Care , Sickness Impact Profile , Socioeconomic Factors , United Kingdom , Young Adult
9.
J Telemed Telecare ; : 1357633X231167900, 2023 Apr 17.
Article in English | MEDLINE | ID: mdl-37063069

ABSTRACT

INTRODUCTION: Restrictions on face-to-face (F2F) healthcare services during the recent COVID-19 pandemic necessitated novel provision of care for Ponseti-treated clubfoot patients. This retrospective review compares the effectiveness of telemedicine (TM) using live-stream videoconferencing compared to conventional F2F review, in two cohorts of 78 patients attending routine follow-up, during Ponseti-treated clubfoot bracing in their first 5 years. METHODS: Rates of compliance, recurrence of deformity, and type of intervention provided were compared between cohorts. The TM cohort was re-evaluated F2F as part of routine follow-up care. Attendance rates were compared between cohorts and with an equivalent time period the previous year. RESULTS: There was no significant difference in the rate of compliance between cohorts (77% in the TM group, 74% in the F2F group), or in the rate of recurrence. Subsequent F2F review of the TM cohort showed that compliance had improved in some patients, indicating successful TM intervention. There were no missed cases of recurrence. TM follow-up appointments offered similar rates of management of skin problems, brace adjustment, and provision of exercises. At least one element of intervention was provided in 64% of the TM group, and 72% of the F2F group. TM connection was successful in 74% of booked appointments. The number of patients attending was similar to F2F bookings one year prior. DISCUSSION: The use of TM for routine follow-up of Ponseti-treated clubfoot patients can be as clinically effective as F2F assessment, and has potential for integration into routine follow-up care.

10.
Pilot Feasibility Stud ; 9(1): 143, 2023 Aug 15.
Article in English | MEDLINE | ID: mdl-37582801

ABSTRACT

BACKGROUND: There is a dearth of research to support the treatment of people with postural tachycardia syndrome (PoTS). Despite expert consensus suggesting exercise is recommended for this patient group, there are no randomised control trials examining this rigorously. The aim was to co-create a feasibility trial protocol and a rehabilitation intervention for people living with PoTS. METHODS: The intervention and feasibility trial design were co-created as part of the PostUraL tachycardia Syndrome Exercise (PULSE) study. We used the 'three co's framework' of co-define, co-design and co-refine. Recruitment included key national charities and National Health Service Trusts treating people living with PoTS in the UK. Eighteen patient and public involvement members attended the co-define session, and 16 co-creators with a mix of expertise attended the subsequent co-design and co-refine sessions. Seven intervention practitioners were trained in the rehabilitation intervention, providing feedback for further co-refinement. RESULTS: The final co-created intervention comprises online physical activity, and lifestyle and behaviour change support sessions. It is based on functional movement activities using a patient-centred approach tailored to individual needs. Physical activity intensity is guided by individuals' perception of effort rather than by objective measures. Recumbent bikes are provided for home use. Patients deemed randomisation to be acceptable because research in this area was considered important. CONCLUSIONS: An innovative approach was used to co-create the PULSE intervention and feasibility trial protocol to meet the evidence-based and logistical needs of people living with PoTS, clinicians, service deliverers, third-sector organisations, academics and funders. This can be used as a successful example and template for future research internationally. People living with PoTS were recognised as experts and involved in every aspect of conceptualisation, design and refinement. This complex rehabilitation intervention is currently being tested in a randomised feasibility trial comparing the PULSE intervention with best-practice usual care for people living with PoTS. TRIAL REGISTRATION: ISRCTN45323485 was registered on April 7, 2020.

11.
Orphanet J Rare Dis ; 18(1): 104, 2023 05 04.
Article in English | MEDLINE | ID: mdl-37143135

ABSTRACT

BACKGROUND: Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD) are debilitating conditions. Diagnosis is currently clinical in the absence of biomarkers, and criteria developed for adults are difficult to use in children and biologically immature adolescents. Generalized joint hypermobility (GJH) is a prerequisite for hEDS and generalized HSD. Current literature identifies a large proportion of children as hypermobile using a Beighton score ≥ 4 or 5/9, the cut off for GJH in adults. Other phenotypic features from the 2017 hEDS criteria can arise over time. Finally, many comorbidities described in hEDS/HSD are also seen in the general pediatric and adolescent population. Therefore, pediatric specific criteria are needed. The Paediatric Working Group of the International Consortium on EDS and HSD has developed a pediatric diagnostic framework presented here. The work was informed by a review of the published evidence. OBSERVATIONS: The framework has 4 components, GJH, skin and tissue abnormalities, musculoskeletal complications, and core comorbidities. A Beighton score of ≥ 6/9 best identifies children with GJH at 2 standard deviations above average, based on published general population data. Skin and soft tissue changes include soft skin, stretchy skin, atrophic scars, stretch marks, piezogenic papules, and recurrent hernias. Two symptomatic groups were agreed: musculoskeletal and systemic. Emerging comorbid relationships are discussed. The framework generates 8 subgroups, 4 pediatric GJH, and 4 pediatric generalized hypermobility spectrum disorders. hEDS is reserved for biologically mature adolescents who meet the 2017 criteria, which also covers even rarer types of Ehlers-Danlos syndrome at any age. CONCLUSIONS: This framework allows hypermobile children to be categorized into a group describing their phenotypic and symptomatic presentation. It clarifies the recommendation that comorbidities should be defined using their current internationally accepted frameworks. This provides a foundation for improving clinical care and research quality in this population.


Subject(s)
Connective Tissue Diseases , Ehlers-Danlos Syndrome , Joint Instability , Adult , Adolescent , Humans , Child , Joint Instability/diagnosis , Ehlers-Danlos Syndrome/diagnosis , Skin
13.
Pilot Feasibility Stud ; 8(1): 101, 2022 May 07.
Article in English | MEDLINE | ID: mdl-35525992

ABSTRACT

BACKGROUND: The PULSE (PostUraL tachycardia Syndrome Exercise) study is a randomised controlled trial assessing the feasibility of conducting a multicentre RCT testing supervised exercise rehabilitation with behavioural and motivational support, compared to best-practice usual care, for people with Postural Tachycardia Syndrome (PoTS). The original trial protocol was published in BMC Pilot & Feasibility Studies (accessible at https://doi.org/10.1186/s40814-020-00702-1 ). The PULSE intervention consists of (1) individual assessment; (2) 12-week, twice-weekly, supervised exercise training; (3) behavioural and motivational support; and (4) guided lifestyle physical activity. The control intervention is best-practice usual care with a single 30-min, one-to-one practitioner appointment, and general advice on safe and effective physical activity. Sixty-two people (aged 18-60 years) with a confirmed diagnosis of PoTS will be invited to enrol on a feasibility RCT with an embedded qualitative study. The primary outcome will be feasibility; process-related measures will include eligibility, recruitment, randomisation and withdrawal rates, along with indicators of exercise programme adherence and acceptability. Secondary physiological, clinical and health-related outcomes will be assessed. In response to the COVID-19 pandemic, here we describe amendments to the trial protocol. METHODS: Restrictions imposed by the COVID-19 pandemic meant it was necessary to change the delivery of the PULSE and control interventions. These changes reflected the need to limit the risk of COVID-19 transmission in a clinical population, some of whom were at increased risk of contracting the virus and suffering serious illness. The major change was that the originally intended centre-based PULSE and control interventions would now be delivered remotely on-line. Subsequently, there were minor changes to the participant eligibility criteria. These decisions followed an on-line co-creation session with people affected by PoTS, and relevant public and professional stakeholders. CONCLUSIONS: We present an update of the original trial protocol in response to the COVID-19 pandemic. No participants were recruited to the original protocol; thus, results will reflect the on-line delivery of the intervention. PULSE will be the first randomised trial to assess the feasibility of conducting a definitive multi-centre RCT testing supervised on-line exercise rehabilitation with behavioural and motivational support, compared to best-practice usual care, for people with PoTS. TRIAL REGISTRATION: ISRCTN45323485 registered on 7 April 2020.

14.
Vaccines (Basel) ; 10(3)2022 Feb 25.
Article in English | MEDLINE | ID: mdl-35334991

ABSTRACT

South Africa launched a mass COVID-19 vaccination campaign in May 2021, targeting 40 million adults. Understanding predictors of COVID-19 vaccine intentions was required to achieve this goal. We conducted a population-based survey in June-July 2021 using the WHO Behavioral and Social Drivers (BeSD) of COVID-19 Vaccination tool to determine predictors of vaccine hesitancy, defined as intention to refuse or uncertainty whether to accept COVID-19 vaccination. There were 1193 participants, mean age 39 (standard deviation 15) years, and 53% women, of whom 58% trusted information provided by healthcare workers and 32% were vaccine hesitant. Independent predictors of vaccine hesitancy included concerns about side effects (odds ratio (OR) 11.41; 95% confidence interval (CI) 3.5-50.80), lack of access to the online vaccine registration platform (OR 4.75; CI 2.15-10.37), distrust of government (OR 3.0; CI 1.33-6.77), belief in conspiracy theories (OR 3.01; CI 1.32-6.77), having no monthly income (OR 1.84; CI 1.12-3.07), and depending on someone else to make vaccination decision (OR 2.47; CI 1.06-5.77). We identified modifiable predictors of vaccine hesitancy at the start of South Africa's COVID-19 vaccination rollout. These factors should be addressed by different stakeholders involved in the national immunization program through tailored communication and other effective strategies that increase vaccine literacy, reach low-income households, and engender confidence in government.

15.
Front Med (Lausanne) ; 9: 1072764, 2022.
Article in English | MEDLINE | ID: mdl-36743665

ABSTRACT

Experts in symptomatic generalized joint hypermobility (S-GJH) agree that upper cervical instability (UCI) needs to be better recognized in S-GJH, which commonly presents in the clinic as generalized hypermobility spectrum disorder and hypermobile Ehlers-Danlos syndrome. While mild UCI may be common, it can still be impactful; though considerably less common, severe UCI can potentially be debilitating. UCI includes both atlanto-occipital and atlantoaxial instability. In the absence of research or published literature describing validated tests or prediction rules, it is not clear what signs and symptoms are most important for diagnosis of UCI. Similarly, healthcare providers lack agreed-upon ways to screen and classify different types or severity of UCI and how to manage UCI in this population. Consequently, recognition and management of UCI in this population has likely been inconsistent and not based on the knowledge and skills of the most experienced clinicians. The current work represents efforts of an international team of physical/physiotherapy clinicians and a S-GJH expert rheumatologist to develop expert consensus recommendations for screening, assessing, and managing patients with UCI associated with S-GJH. Hopefully these recommendations can improve overall recognition and care for this population by combining expertise from physical/physiotherapy clinicians and researchers spanning three continents. These recommendations may also stimulate more research into recognition and conservative care for this complex condition.

16.
Curr Opin Rheumatol ; 23(2): 131-6, 2011 Mar.
Article in English | MEDLINE | ID: mdl-21252682

ABSTRACT

PURPOSE OF REVIEW: Hypermobility and hypermobility syndrome are common conditions with universal interest. However, despite significant advances in our knowledge of the presentation and implications of lax tissues there is still much to learn about the best way to manage the symptoms. This review discusses our current knowledge on the management of joint problems associated with hypermobility syndrome. RECENT FINDINGS: Relieving joint pain and preventing its recurrence are primary aims of treatment and exercise to improve joint stability and control is a major component of physical rehabilitation. Research has identified that posture, proprioception, strength and motor control are important components in achieving this aim along with education, physical activity and fitness. SUMMARY: It is not yet known what form the optimal physical rehabilitation programme should take, but the components discussed here are based on sound scientific principles which it is hoped will further knowledge, stimulate interest and promote further research.


Subject(s)
Arthralgia/rehabilitation , Exercise Therapy , Joint Instability/rehabilitation , Adult , Humans , Motor Activity , Physical Fitness
17.
Pilot Feasibility Stud ; 6: 157, 2020.
Article in English | MEDLINE | ID: mdl-33083000

ABSTRACT

BACKGROUND: Postural orthostatic tachycardia syndrome (POTS) is an autonomic nervous system disorder causing an abnormal cardiovascular response to upright posture. It affects around 0.2% of the population, most commonly women aged 13 to 50 years. POTS can be debilitating; prolonged episodes of pre-syncope and fatigue can severely affect activities of daily living and health-related quality of life (HRQoL). Medical treatment is limited and not supported by randomised controlled trial (RCT) evidence. Lifestyle interventions are first-line treatment, including increased fluid and salt intake, compression tights and isometric counter-pressure manoeuvres to prevent fainting. Observational studies and small RCTs suggest exercise training may improve symptoms and HRQoL in POTS, but evidence quality is low. METHODS: Sixty-two people (aged 18-40 years) with a confirmed diagnosis of POTS will be invited to enrol on a feasibility RCT with embedded qualitative study. The primary outcome will be feasibility; process-related measures will include the number of people eligible, recruited, randomised and withdrawn, along with indicators of exercise programme adherence and acceptability. Secondary physiological, clinical and health-related outcomes including sub-maximal recumbent bike exercise test, active stand test and HRQoL will be measured at 4 and 7 months post-randomisation by researchers blinded to treatment allocation. The PostUraL tachycardia Syndrome Exercise (PULSE) intervention consists of (1) individual assessment; (2) 12-week, once to twice-weekly, supervised out-patient exercise training; (3) behavioural and motivational support; and (4) guided lifestyle physical activity. The control intervention will be best-practice usual care with a single 30-min, one-to-one practitioner appointment, and general advice on safe and effective physical activity. For the embedded qualitative study, participants (n = 10 intervention, n = 10 control) will be interviewed at baseline and 4 months post-randomisation to assess acceptability and the feasibility of progressing to a definitive trial. DISCUSSION: There is very little high-quality research investigating exercise rehabilitation for people with POTS. The PULSE study will be the first randomised trial to assess the feasibility of conducting a definitive multicentre RCT testing supervised exercise rehabilitation with behavioural and motivational support, compared to best-practice usual care, for people with POTS. TRIAL REGISTRATION: ISRCTN45323485 registered on 7 April 2020.

18.
Musculoskeletal Care ; 17(2): 261-269, 2019 06.
Article in English | MEDLINE | ID: mdl-31062457

ABSTRACT

OBJECTIVE: The primary aim of the study was to explore the prevalence of generalized joint hypermobility (GJH) and generalized hypermobility spectrum disorder (gHSD) using the new classification system in a community paediatric physiotherapy service in Ireland. The second aim was to explore the relationship between GJH, gHSD and physical activity level, while considering the association of probable developmental coordination disorder (pDCD). METHODS: A case-controlled cross-sectional study of children aged 6-12 years, recruited from the community paediatric physiotherapy department (n = 32) and a local school (n = 41), was carried out. A Beighton score of ≥6/9 distinguished GJH. The new framework for hypermobility spectrum disorder (HSD) was used. Self-reported physical activity level was measured using the Physical Activity Questionnaire-Older Children. A parent-reported validated questionnaire screened for pDCD. RESULTS: The prevalence of GJH was 21.9% of children attending physiotherapy. One child in the physiotherapy group was identified as having gHSD, with a prevalence of 3.1%. There was no significant difference in physical activity level between children with and without GJH attending physiotherapy (independent samples t-test, p = 0.28). Probable developmental coordination disorder (pDCD) was observed in 71.9% of children attending physiotherapy. There was no significant difference in the number of children with pDCD in those with and without GJH (Fisher's exact test, p = 0.370). CONCLUSIONS: This study was the first to explore the prevalence of GJH and gHSD in the paediatric physiotherapy population in Ireland. The presence of GJH did not affect self-reported physical activity level or motor coordination in children attending physiotherapy.


Subject(s)
Joint Instability/epidemiology , Adolescent , Case-Control Studies , Child , Cross-Sectional Studies , Exercise , Female , Humans , Ireland/epidemiology , Male , Motor Skills Disorders , Prevalence
19.
Phys Ther Sport ; 37: 86-90, 2019 May.
Article in English | MEDLINE | ID: mdl-30904749

ABSTRACT

OBJECTIVE: This study aims to validate the Lower Limb Assessment Score against the current gold standard Beighton Scale within an adult elite footballing population to allow for future research to explore the influence of lower limb specific hypermobility on injury incidence. DESIGN: Observational cohort study. SETTING: Thirty-six male, professional footballers aged between 18 and 37 years old. MAIN OUTCOME MEASURES: The Sensitivity, specificity, positive predictive value, negative predictive value and Spearman's rank correlation between the LLAS and Beighton Scale. RESULTS: There was significant strong correlation between LLAS and Beighton Scale scores (ρ = 0.732; p < 0.001). The LLAS displayed a sensitivity of 67% and specificity of 94% when a cut off of ≥4/12 was applied to the screening data. This cut off point also yielded moderate Positive Predictive Validity (50%) and excellent Negative Predictive Validity (97%). CONCLUSIONS: The present study suggests that the LLAS is a valid test for identifying lower limb hypermobility within an adult male footballing population when a cut off of ≥4/12 is used.


Subject(s)
Arthrometry, Articular , Joint Instability/diagnosis , Lower Extremity/physiopathology , Adolescent , Adult , Cohort Studies , Female , Humans , Joint Instability/physiopathology , Male , Predictive Value of Tests , Sampling Studies , Sensitivity and Specificity , Soccer , Young Adult
20.
Phys Ther ; 99(9): 1189-1200, 2019 09 01.
Article in English | MEDLINE | ID: mdl-31158283

ABSTRACT

Hypermobility spectrum disorder (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) can cause widespread or chronic pain, fatigue, and proprioceptive and coordination deficits resulting in functional restrictions. These conditions are common and often unrecognized, and patients are likely to present in physical therapy for musculoskeletal injuries, pain, or coordination deficits. Although physical therapy is considered central to managing these conditions, many patients report pain and iatrogenic injuries due to inappropriate interventions. The diagnostic classification for these conditions was revised in 2017 to supersede previous diagnostic categories of Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome-hypermobility type/type III. It is now known that these conditions affect multiple body systems and not just joints and that patients require a holistic approach. This Perspective article will describe the 2017 diagnostic classification system, clinical presentation, examination, evaluation, and management of patients with HSD/hEDS. Both adult and pediatric cases are presented to illustrate the patient management concepts discussed. This knowledge can lead to more effective management of this patient population.


Subject(s)
Ehlers-Danlos Syndrome , Joint Instability , Ehlers-Danlos Syndrome/complications , Ehlers-Danlos Syndrome/diagnosis , Ehlers-Danlos Syndrome/therapy , Fatigue/etiology , Fatigue/therapy , Humans , Joint Instability/complications , Joint Instability/diagnosis , Joint Instability/therapy , Mastocytosis/complications , Physical Therapy Modalities , Postural Orthostatic Tachycardia Syndrome/complications , Prognosis , Symptom Assessment
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