Diana Jackson

Shoulder pain after stroke: a review of the evidence base to inform the development of an integrated care pathway

Background: Shoulder pain is a common complication of stroke. It can impede rehabilitation and has been associated with poorer outcomes and prolonged hospital stay. This systematic review was undertaken to inform the development of an evidence-based integrated care pathway (ICP) for the management of hemiplegic shoulder pain (HSP). Aims and objectives: 1) To provide a background understanding of the functional anatomy of the shoulder and its changes following stroke. 2) To review the literature describing incidence and causation of HSP and the evidence for factors contributing to its development. 3) To appraise the evidence for effectiveness of different interventions for HSP. Methods: Data sources comprised a computer-aided search of published studies on shoulder pain in stroke or hemiplegia and references to literature used in reviews (total references = 121). Main findings: Although a complex variety of physical changes are associated with HSP, these broadly divide into ‘flaccid’ and ‘spastic’ presentations. Management should vary accordingly; each presentation requiring different approaches to handling, support and intervention. (1) In the ‘accid stage, the shoulder is prone to inferior subluxation and vulnerable to soft-tissue damage. The arm should be supported at all times and functional electrical stimulation may reduce subluxation and enhance return of muscle activity. (2) In the spastic stage, movement is often severely limited. Relieving spasticity and maintaining range requires expert handling; overhead exercise pulleys should never be used. Local steroid injections should be avoided unless there is clear evidence of an in‘ammatory lesion. Conclusions: HSP requires co-ordinated multidisciplinary management to minimize interference with rehabilitation and optimize outcome. Further research is needed to determine effective prophylaxis and document the therapeutic effect of different modalities in the various presentations. Development of an integrated care pathway provides a reasoned approach to management of this complex condition, thus providing a sound basis for prospective evaluation of different interventions in the future.

Acquired brain injury and dementia: A comparison of carer experiences

Objective: As their differential needs are unknown and to inform service planning, this study (a) examined experiences of caring for adults with acquired brain injury (ABI) and (b) compared these with carers of adults with dementia. Design: Cross-sectional postal survey. ABI carer experiences were compared with those of a previously studied group of dementia carers using equivalent instruments. Methods: Family carers (n = 222) of adults with ABI: TBI (49%), strokes (26%), brain infections (18%) and other (7%) completed validated questionnaires assessing physical dependency and psychological problems of those cared for and carers’ own perceived burden, quality-of-life and mental health. Results: Carer burden, quality-of-life and mental health were worse for ABI carers, but were not predicted by gender, relationship, injury type, physical dependency or cognitive problems in either ABI or dementia carers. Behavioural problems of those cared for varied between the two groups and affected carers differently. Aggressive problems significantly predicted greater burden, poor quality-of-life and mental health in ABI carers, whereas passivity/low mood significantly predicted greater burden and worse quality-of-life in dementia carers. Conclusions: This study revealed different experiences of caring for younger adults with ABI vs. older adults with dementia, thereby supporting targeted development of services to sustain families affected by these conditions.

Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews.

Background: Family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, an incurable, mostly rapidly fatal neurodegenerative disease, face many challenges. Although there is considerable research on caregiver burden in Motor Neurone Disease/Amyotrophic Lateral Sclerosis, there is less knowledge of the positive aspects of caring. Objective: To explore the experiences of family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, specifically the relationship between positive and negative experiences of caring, and to identify possible ways to better support these caregivers. Methods: Secondary thematic analysis of 24 semi-structured qualitative interviews conducted longitudinally with 10 family caregivers. Interviews explored rewarding and unrewarding aspects of caring. Results: Themes emerged around burden, needs, rewards and resilience. Resilience included getting active, retaining perspective and living for the moment. Burden was multifaceted, including social burden, responsibility, advocacy, ambivalence, guilt and struggling with acceptance. Rewards included being helped and ‘ticking along’. Needs were multifaceted, including social, practical and psychological needs. The four main themes were interrelated. A model of coping was developed, integrating resilience (active/positive), burden (active/negative), needs (passive/negative) and reward (passive/positive). Conclusion: Burden, resilience, needs and rewards are interrelated. Caregivers’ ability to cope with caring for a person with Motor Neurone Disease/Amyotrophic Lateral Sclerosis oscillates between positive and negative aspects of caring, being at times active, at times passive. Clinical implications: Coping is a non-linear process, oscillating between different states of mind. The proposed model could enable clinicians to better understand the caregiver experience, help family caregivers foster resilience and identify rewards, and develop appropriate individualised caregiver support plans.

Assessment of shoulder pain in hemiplegia: Sensitivity of the ShoulderQ

Background. The ShoulderQ is a structured questionnaire designed to assess timing and severity of hemiplegic shoulder pain (HSP), in order to target pain relief effectively. It includes both verbal and visual graphic rating scale questions, simply presented for patients with language/visuo-spatial deficits following stroke. Objective. To assess the sensitivity of the ShoulderQ to clinical improvement in shoulder pain following multi-disciplinary intervention. Design and setting. Retrospective analysis of serial questionnaires collected in the course of clinical treatment in an in-patient neurological rehabilitation unit. Subjects and interventions. Thirty consecutive adults with cognitive and communicative deficits, presenting with hemiplegic shoulder pain following acquired brain injury. Multi-disciplinary treatment was delivered through an integrated care pathway, and ShoulderQs recorded fortnightly, including at baseline and end of treatment. Results. Changes on visual graphic rating scale (VGRS) were associated with verbal reports of improvement (rho 0.665, p < 0.001). Patients were divided retrospectively on the basis of their overall clinical response into responders (n = 18) and non-responders (n = 12). Responders showed significant change in both VGRS and verbal scores, whereas the non-responder group did not. A change in summed VGRS score of ≥3 showed 77% sensitivity and 91.3% specificity for identifying the responders, with a positive predictive value of 93.3%. Summed VGRS scores of ≤2 had a negative predictive value of 73.3%. Conclusion. In this preliminary evaluation of clinical data, the ShoulderQ appears to provide a sensitive measure of shoulder pain which is responsive to change in pain experience for those able to complete the questionnaire, despite the difficulties that many of this group of patients may have in reporting their symptoms. Set alongside previously reported test-retest reliability, the results support the utility of the ShoulderQ as a simple and practical tool for evaluation of shoulder pain in patients with severe complex disabilities.

Can young severely disabled stroke patients regain the ability to walk independently more than three months post stroke

Objective: To investigate the acquisition of ability to walk independently in young severely disabled stroke patients unable to walk three months after onset. Setting: A regional rehabilitation unit providing post-acute neurorehabilitation mainly for patients aged 16–65 years. Subjects and methods: A retrospective analysis of records was undertaken for 152 stroke patients admitted consecutively over a three-year period. All had a combination of physical, cognitive and language impairments; male/female 98/54; median age 54 (IQR 47–60) years. Main outcome measures: Time taken from stroke onset to regain the ability to walk safely and independently at least 5 metres around the hospital bay. Results: Seventy-five (49%) regained the ability to walk independently between 3 and 11 months post onset. Patients with cognitive impairments and neglect took longer to walk. Time from stroke onset to admission was longer in patients who did not walk (median 16.3 weeks), than in those who regained walking (median 12.7 weeks; p = 0.009). Independent positive associations were found between the time taken to walk and time from onset to referral for rehabilitation (= 0.55; p < 0.001), and time from acceptance to admission (= 0.30; p = 0.008). Conclusion: With intensive specialist input, significant numbers of severely disabled young stroke patients can regain independent walking many months after onset, though late walkers may follow a slower recovery course. These results argue for investment in appropriate rehabilitation for these patients. Waiting list delays may prolong rehabilitation and potentially compromise cost effectiveness.

Progression, Symptoms and Psychosocial Concerns among Those Severely Affected by Multiple Sclerosis: A Mixed-Methods Cross-Sectional Study of Black Caribbean and White British People

Objective Multiple sclerosis is now more common among minority ethnic groups in the UK but little is known about their experiences, especially in advanced stages. We examine disease progression, symptoms and psychosocial concerns among Black Caribbean (BC) and White British (WB) people severely affected by MS. Design Mixed methods study of 43 BC and 43 WB people with MS (PwMS) with an Expanded Disability Status Scale (EDSS) ≥6 involving data from in clinical records, face-to-face structured interviews and a nested-qualitative component. Progression Index (PI) and Multiple Sclerosis Severity Score (MSSS) were calculated. To control for selection bias, propensity scores were derived for each patient and adjusted for in the comparative statistical analysis; qualitative data were analysed using the framework approach. Results Median EDSS for both groups was (6.5; range: 6.0–9.0). Progression Index (PI) and Multiple Sclerosis Severity Score (MSSS) based on neurological assessment of current EDSS scores identified BC PwMS were more likely to have aggressive disease (PI F = 4.04, p = 0.048, MSSS F = 10.30, p<0.001). Patients’ reports of the time required to reach levels of functional decline equivalent to different EDSS levels varied by group; EDSS 4: BC 2.7 years v/s WB 10.2 years (U = 258.50, p = 0.013), EDSS 6∶6.1 years BC v/s WB 12.7 years (U = 535.500, p = 0.011), EDSS 8: BC 8.7 years v/s WB 10.2 years. Both groups reported high symptom burden. BC PwMS were more cognitively impaired than WB PwMS (F = 9.65, p = 0.003). Thematic analysis of qualitative interviews provides correspondence with quantitative findings; more BC than WB PwMS referred to feelings of extreme frustration and unresolved loss/confusion associated with their rapidly advancing disease. The interviews also reveal the centrality, meanings and impact of common MS-related symptoms. Conclusions Delays in diagnosis should be avoided and more frequent reviews may be justified by healthcare services. Culturally acceptable interventions to better support people who perceive MS as an assault on identity should be developed to help them achieve normalisation and enhance self-identity.

Costs of caring for adults with long-term neurological conditions.

OBJECTIVES To estimate and compare the costs of informal and formal care provided to adults with long term neurological conditions and to identify characteristics associated with these costs. DESIGN Cross-sectional postal questionnaire survey. PARTICIPANTS Family carers of 282 adults with sudden onset, progressive and stable/intermittent conditions were recruited through UK-wide voluntary organisations and neuroscience centres. METHODS Carers provided demographic and condition specific information about the adults cared for. Informal care was measured with the Caregiver Activity Survey and formal service use with the Client Service Receipt Inventory. Costs were calculated and regression analyses identified demographic and clinical characteristics associated with cost. RESULTS Annual informal care costs mean £82,620 (standard deviation 58,493) were 4 times higher than formal costs mean £18,117 (standard deviation 28,990). Caring for adults with sudden onset conditions and hidden/mixed impairments were both significantly associated with informal costs. Healthcare costs were significantly associated with having a sudden onset condition, greater dependency in activities of daily living and longer condition duration. Greater dependency was significantly associated with increased social care costs. CONCLUSIONS The cost of caring for adults with long term neurological conditions is largely borne by families. Both health and social costs are higher for more dependent patients, endorsing the importance of developing specialist rehabilitation services that reduce dependency.

The Needs and Provision Complexity Scale: a multicentre prospective cohort analysis of met and unmet needs and their cost implications for patients with complex neurological disability.

Objective To provide a brief overview of the Needs and Provision Complexity Scale (NPCS) and report its first application to describe the level of ‘met’ and ‘unmet’ health/social care needs, and to estimate their costs in community-based patients with complex neurological disability. Design A multicentre prospective cohort analysis. Setting Consecutive discharges to the community from the nine tertiary specialist inpatient neurorehabilitation units in London over 12 months (2010/2011). Participants Patients responding at follow-up (n=211). Mean age 50.2(SD14) years, males:females 127/84. Diagnosis 157(74%) brain injury, 27(13%) spinal cord injury/peripheral neuropathy; 27(13%) other. Primary outcome measure The NPCS is a brief, pragmatic, directly costable instrument for measuring both an individuals needs for rehabilitation and support (NPCS-Needs) and the levels of service provided (NPCS-Gets) within a given period. Methods The ‘NPCS-Needs’ was completed by the treating clinical team at discharge. Patients and/or their carers self-reported ‘NPCS-Gets’ after 6 months by a postal/online questionnaire supported by a follow-up telephone interview. Results Needs for medical/nursing care and accommodation were generally well met. Significant shortfalls in provision were identified in the subscales of Rehabilitation (paired t test: t −9.7, p<0.001, effect size (ES)=−0.85), Social support (t −5.8, p<0.001, ES=−0.48) and Equipment (t −5.6, p<0.001, ES=−0.44). Item-level analysis demonstrated that the frequency of Personal care received exceeded predicted needs (Wilcoxon z=−3.3, p<0.001). In 80% of cases, this care was provided/paid for by families. Translated into mean costs/patient/year, the estimated underspends on Rehabilitation (−£2320) and Social support (−£1790) were exceeded >3.5-fold by excess costs of Personal care (£10 313) and Accommodation (£4296). Conclusions The results identify underprovision of community-based rehabilitation and support services compared with needs, which may contribute directly to excess care burden and costs to family carers. The NPCS requires further evaluation but has potential use as a simple, directly costable tool to inform both clinical decision-making and population-based service planning and delivery.

Use of an integrated care pathway: A third round audit of the management of shoulder pain in neurological conditions

OBJECTIVES To complete a third round audit of management of shoulder pain using an integrated care pathway, to evaluate pro forma documentation and to determine outcome. SUBJECTS AND SETTING Thirty-four patients with upper limb paresis admitted to a rehabilitation unit during a 22-month period had shoulder pain and were included in the integrated care pathway. METHODS Retrospective review of pro forma documentation against pre-determined standards. RESULTS Compared with the second round audit, performance against 5 out of 9 standards for initial assessment and documentation had improved, and ranged from 56% to 94%. Achievement of 9 further standards relating to continued management ranged from 44% to 97%. Variance was not always well recorded. Shoulder pain resolved or improved in 18/34 (53%) of patients. CONCLUSION Introducing the pro forma improved standards of documentation and demonstrated a positive outcome in over half the patients. Some problems with developing and maintaining integrated care pathways in the context of rehabilitation are discussed.

A longitudinal, multicentre, cohort study of community rehabilitation service delivery in long-term neurological conditions

Objectives Part A: To pilot the use of a register to identify and monitor patients with complex needs arising from long-term neurological conditions. Part B: To determine the extent to which patients’ needs for health and social services are met following discharge to the community after inpatient rehabilitation; to identify which factors predict unmet needs and to explore the relationship between service provision and outcomes at 12 months. Design A multicentre, prospective, cohort study surveying participants at 1, 6 and 12 months using postal/online questionnaires and telephone interview. Setting Consecutive discharges to the community from all nine tertiary, specialist, inpatient neurorehabilitation services in London over 18 months in 2010–2011. Participants Of 576 admissions 428 patients were recruited at discharge: 256 responded at 4 weeks, 212 at 6 months and 190 at 12 months. Measures Neurological Impairment Scale, The Needs and Provision Complexity Scale, The Northwick Park Dependency Scale, Community Integration Questionnaire, Zarit Burden Inventory. Results n=322 (75%) expressed willingness to be registered, but in practice less than half responded to questionnaires at 6 and 12 months (49% and 44%, respectively), despite extensive efforts to contact them, with no significant differences between responders and non-responders. Significant unmet needs were identified within the first year following discharge, particularly in rehabilitation, social work support and provision of specialist equipment. Dependency for basic care and motor and cognitive impairment predicted services received, together accounting for 40% of the variance. Contra to expectation, patients whose rehabilitation needs were met were more dependent and less well integrated at 12 months post discharge than those with unmet needs. Conclusions Registration is acceptable to most patients, but questionnaires/telephone interviews may not be the most efficient way to reach them. When community resources are limited, service provision tends to be focused on the most dependent patients. Registration The study was registered with the NIHR Comprehensive Local Research Network: ID number 7503