P19 NFC BASED SELF-ASSESSMENT OF SYMPTOMS IN ALS
MAIER A1, HOLM T1, LINKE P1, STEINFURTH L1, MÜNCH C1, MEYER R1, LEIMEISTER JM2, PRINZ A2, MEYER T1
1Charité University Hospital - Neurology, Berlin, Germany, 2Kassel University - Chair for Information Systems, Kassel, Hessen, Germany
Email address for correspondence: [email protected]
Keywords: electronic self-assessment, near field communication, ALSFRSr
Background: With the development of new technical solutions, electronic capturing methods of symptoms in chronic conditions like ALS gains importance. In this respect self-assessment is a useful approach to include the patient's perspective in estimation of disease progression. Therefore we developed a smart poster that uses near field communication (NFC) technology. It forms, in combination with the ALS functional rating scale (revised) as a well evaluated and established self-assessment questionnaire, an easily applicable tool for the collection of health related information.
Objectives: To develop new PC independent elctronic methods for self-assessment in ALS.
Method: In a prospective controlled study 18 patients conducted a weekly self-assessment over a period of 12 weeks with the smart poster. The smart poster is based on radio frequency identification (RFID) as a form of NFC technology with very short range that enables data transmission between devices without confirmation. The single items of the ALSFRSr are arranged in a certain layout on the poster. A RFID chip with a distinct label is located behind every item of the score. With a NFC capable mobile phone the patient fills in the questionnaire without pushing any button, just by touching the answers with the phone. The phone reads, saves and sends the data to a server for visualisation on a web frontend.
Results: Eighteen patients (11 male, 7 female; 54 years on average) were included in the study. The smart poster and a suitable mobile phone were provided. There were no transmission errors or missing data. Causes for dropout were death (n = 2) and discontinuation without giving any reasons (n = 3). The baseline ALSFRSr on average was 33.7 the first ALSFRSr value captured with the smart poster was 33.3 (correlation 0.91, p < 0.001). After 12 weeks the ALSFRSr was 29.8.
Discussion: The electronic documentation of self-assessment in the home care environment could be seen as an addition to present paper based methods. The smart poster is a simple, easily applied, safe and PC independent way of gathering self-assessment data. This study proves the concept and supports the trend of comfortable data capturing through mobile devices in home care and clinical research.
p20 MND Aware: Targeted web-based awareness training program about Motor Neurone Disease
SVOLOS G, WATERSON P
Motor Neurone Disease Association of NSW (MND NSW), Gladesville NSW, Australia
Email address for correspondence: [email protected]
Keywords: online, training, health and community care professionals
Background: Health and community care professionals involved in the care of a person with motor neurone disease (MND) may have little or no knowledge about MND and the needs of people living with this disease. MND NSW delivers face-to-face education about MND but it is not always possible to deliver this immediately and/or at a convenient location.
Objectives: To increase health and community care professional understanding about MND and the needs of people living with MND through the development of web-based training about: MND awareness - MND and the impact it has on an individual's life; MND case management - effective ways of responding to people with MND.
Methods: A 26 question online survey was developed to elicit stakeholder MND experience and training and information needs. Learning objectives and a module structure were developed. The MND Aware training program was published online using a low-cost ‘non-technical’ commercially available e-learning authoring tool.
Results: 118 health and community care professionals from general community service, acute care hospital, non-government organisation, palliative care, rehabilitation, aged care, residential care and private practice work settings completed the online survey. 91% (n = 107) were from New South Wales, 9% (n = 11) from other Australia and New Zealand. The majority (69%, n = 79) had worked more than 2 years in a role with MND clients. All but one respondent wanted to be moderately informed (25%, n = 29) or extremely informed (74%, n = 86) about MND. The top 3 ‘things’ respondents identified a health and community care professional should know about the needs of people living with MND related to approach to client management (28%, n = 91 mentions), strategies for symptom management and wellbeing needs (23%, n = 75 mentions), services available/access (17%, n = 55 mentions), disease types and progression (12%, n = 41 mentions), establishing client need (8%, n = 28 mentions), impact of MND (7.5%, n = 24 mentions) and training and support for care workers (1.6%, n = 5 mentions). From these findings learning objectives and the content was developed. Evidence-based content for each module was sourced. People with MND, carers and health and community care professionals were invited to contribute text, visual, audio and short video content.
Discussion: Using stakeholder identified topic areas for MND training program content provides greater potential for the online training to be relevant to stakeholder needs. These topic areas included: approach to client management, establishing client need, MND disease types and progression, strategies for symptom management and wellbeing, services available/access, the impact of MND and training and support available for care workers.
Conclusion: Health and community care professionals have a keen interest in becoming more informed about MND, and have identified key topic areas for MND Aware module content. Online delivery provides ease of access over a large geographical area.
P21 PALLIATIVE CARE FOR PEOPLE WITH MOTOR NEURONE DISEASE: HOW EFFECTIVE IS AN EDUCATIONAL PROGRAM FOR SERVICE PROVIDERS?
AOUN S1, MCCONIGLEY R1, KRISTJANSON L1, COLYER S2, DEAS K1, O'CONNOR M3, HARRIS R4
1Curtin University, Western Australia, Australia, 2Motor Neurone Disease Association of Western Australia, Western Australia, Australia, 3Monash University, Victoria, Australia, 4Motor Neurone Disease Association of Victoria, Victoria, Australia
Email address for correspondence: [email protected]
Keywords: palliative care, end-of-life, education
Background: Despite a recognised need for a palliative approach to caring for people with motor neurone disease (MND), access to palliative care is often limited and delayed. Education programs for health professionals are recommended to improve knowledge about MND and the integration of a palliative approach in MND care, however there is a lack of available programs to fill this identified gap.
Objectives: This project aimed to improve the knowledge of health professionals about a palliative approach to MND care through the development, implementation and evaluation of an educational program focused on the palliative care needs of people with MND.
Methods: A three-phase study was undertaken after initial consultations with service providers, carers and patients. Knowledge of palliative care and attitudes to providing MND care were measured pre and post delivery of the educational program and one month later via questionnaires. Interviews were conducted six months after the educational program. Non-parametric statistics were used to measure changes in knowledge and attitudes. Content analysis was used to investigate participants’ experience of the program and impact on practice.
Results: The educational program consisted of 6 learning modules. Six one day workshops were held in WA and SA and 78 health professionals participated. Participants demonstrated improvement in MND and palliative care knowledge and attitudes which were maintained at the six month follow-up. Participants indicated that the gained knowledge positively influenced their clinical practice.
Discussion and conclusions: A targeted education program improved understanding about end of life care for people with MND, including understanding of physical and psychosocial needs of MND patients, ability to promote dignity and quality of life and better communication with MND patients. Currently, an implementation plan is being developed between the peak bodies of palliative care and MND to ensure widespread uptake of the educational program across Australia.
P22 INTAKE AND CASE MANAGEMENT OF PEOPLE LIVING WITH MND: HEALTH PROFESSIONAL AND COMMUNITY CARE WORKER EXPERIENCE AND VIEWS
SVOLOS G, WATERSON P
Motor Neurone Disease Association of New South Wales (MND NSW), Gladesville NSW, Australia
Email address for correspondence: [email protected]
Keywords: case management, intake, health and community care professionals
Background: Timely response to identified needs, access to a coordinated and integrated care plan, regular monitoring and review of the person's condition, and appropriateness of the care plan are key aspects of the Statement of good practice for the management of ALS/MND (International Alliance of ALS/MND Associations 2007).
Understanding health professional and community care worker experience in and views about ALS/MND intake and case management provides insight into the training and information needs of this group.
Objectives: To identify health professional and community care worker experience in and views about ALS/MND intake and case management.
Methods: A 26 question online survey was developed to elicit stakeholder: experience in working with people living with MND; views about, issues emerging and strategies for managing MND intake and case management.
Issues emerging and useful strategies for intake and case management of MND clients are illustrated in ‘text clouds’ to allow the visualisation of word frequencies in text (www.tagcrowd.com/blog/about/).
Results: 118 health and community care professionals from community service, acute care hospital, non-government organisation, palliative care, rehabilitation, aged care, residential care and private practice work settings completed the online survey. 91%, (n = 107) were from NSW, 9% (n = 11) from other Australia and New Zealand. 69% (n = 79) had worked more than 2 years in a role with MND clients, 16% (n = 19) between 6 months and 2 years, and 9% (n = 10) less than 6 months (1 non-response). Just under three-quarters of all respondents (74%, n = 84) rated other health and community care professionals slightly informed or somewhat informed about MND, with a similar proportion (74%, n = 86) rating themselves as somewhat or moderately informed. All but one respondent wanted to be moderately informed (25%, n = 29) or extremely informed (74%, n = 86) about MND.
Of all respondents (n = 109, 9 non-responses), 28% (n = 31) do MND case management as a formal part of their role, 32%, n = 25 informally as part of their role and 39% (n = 43) do no MND case management. Of all respondents (n = 111, 9 non-responses), 24% (n = 27) do MND intake as a formal part of their role, 12% (n = 14) do MND intake informally as part of their role and 63% (n = 70) do no intake.
Discussion and conclusions: Health and community care professionals want to be more informed about MND. The identification of views about issues emerging and strategies for managing MND intake and case management provides insight into the views and experiences of professionals in these roles. Using ‘text clouds’ to communicate these responses provides a visual ‘at-a-glance’ approach to understanding respondent experience, perceptions and strategies. This understanding provides a basis for developing information and training programs that address the current perceived needs of health and community care professionals as identified by them.
P23 NECESSITY OF MORE COORDINATOR NURSES FOR PATIENTS WITH ALS - A REVIEW ON A COORDINATOR NURSE'S ACTIVITY IN 5 YEARS IN A RURAL PREFECTURE
NAKAI M1, NARITA Y1,2
1Department of Fundamental Nursing, School of Nursing, Mie University, Tsu, Mie, Japan, 2Department of Neurology, Mie University Hospital, Tsu, Mie, Japan
Email address for correspondence: [email protected]
Keywords: coordinator, nurse
Background: There is only one coordinator nurse working in the prefecture (population 1.87 million) in Japan, who has been accepting consultations for patients with intractable diseases (mostly neurodegenerative disease and especially focusing on ALS).
Objectives: We aimed to know the situation of the coordinator's activity and get some tips to better support patients with ALS in the prefecture.
Methods: We reviewed all the case records of the support for patients with ALS in the prefecture from 1 April 2006 to 31 March 2011.
Results: In a total of 3,123 records in the 5 years, there were 2,014 supports (64%) for ALS patients or families. The case records which had patients’ details numbered 1,985 supports (for men 225, for women 760 times). The number of the patients on the records was 191 (age 30∼86, 64.4 + /- 9.6 years old (mean + /- SD)). The upper 25 percentile was 48 patients, who accounted for 1,374 supports (69,2%). The distribution of supports showed a power series curve. Analysis on the 25 percentiles cases revealed that the factor to elevate number of supports was not age, sex, accepting a respirator, type of respirator (NIV or TIV), total ALSFRS-R score, respiratory function score, respiratory failure score, swallowing function score, or type of carer, but familial internal conflict (p = 0.04). Most support was conducted in neighbouring areas of the coordinator nurse's office.
Discussion and conclusions: The supports from the coordinator until now seemed to have focused on cases with familial internal conflicts and in relatively close areas of the coordinator. This suggested a lack of coordinator nurses and other supporting staff for the patients, like public health nurses, clinical psychotherapists, or social workers. We need to get more coordinator nurses for patients with ALS in each area.
P24 MOTOR NEURONE DISEASE: DISABILITY PROFILE AND SERVICE NEEDS AND GAPS IN AN AUSTRALIAN COHORT
NG L1, TALMAN P2, KHAN F1
1Royal Melbourne Hospital and University of Melbourne, Parkville, Victoria, Australia, 2Barwon Health, Geelong, Victoria, Australia
Email address for correspondence: [email protected]
Keywords: disability, rehabilitation, health service utilization
Objective: Motor neurone disease (MND) places a substantial burden upon patients and their caregivers. This is the first study describing the disability profile and health-care needs for persons with MND in an Australian sample from the perspective of the patients and caregivers to identify current gaps in knowledge and service provision.
Methods: A prospective cross sectional community survey of persons with MND (n = 44) and their caregivers (n = 37) was conducted to determine symptoms and problems affecting their daily living. Standardized assessments were used to determine disease severity for stratification purposes; and service needs and gaps.
Results: The mean age was 61 with more men affected (3:2). Severity of disease was high (n = 18, 41% had severe disease) based on the Amyotrophic Lateral Sclerosis Functional Rating Scale. Despite the high level of disability, 11 (25%) solely relied on their families for all assistance. Caregivers were mostly partners (mean age 57). Persons with MND reported more pain, emotional disturbance and spasticity/cramps/spasms whilst caregivers focused more on psychosocial issues. 19 (43%) of persons with MND reported gaps in service in rehabilitation therapy and respite. Significantly proportionally more caregivers (n = 19, 51%) reported gaps particularly in the area of psychosocial support (formal paid care for personal assistance, additional carer support such as assistance with housework, respite care).
Conclusions: The gaps in MND care identified should be prioritised for future service development using the “neuropalliative rehabilitation” model of care. For improved consensus of care and communication amongst treating clinicians, the framework of International Classification of Functioning, Disability and Health should be explored in this population.
P25 TIMELY ACCESS TO PALLIATIVE CARE – IS THE DOOR OPEN?
GREENE M1, MILLS E2, CARROLL F3, RADUNOVIC A2, SUTHERLAND J1, STANANOUGHT N1, MIDGLEY C1, LAWLESS S1, ASIAM E1, CLARKE J5, BATES C4
1St Francis Hospice, Havering atte Bower, Romford, UK, 2Barts and the London MND Care Centre, London, UK, 3MNDA, London and Essex, UK, 4Queen's Hospital, Romford, UK, 5National Hospital for Neurology and Neurosurgery, London, UK
Email address for correspondence: [email protected]
Keywords: palliative care, widening access, Foot in the Door project
Background: As a part of the UK government initiative on widening access to palliative care services for patients with non-cancer diagnoses, UK Hospice services are encouraging referrals of patients with progressive neurological disease. Patients with MND are often referred late in their illness, when communication is difficult or lost and carers are exhausted. Our regional MND Care Centres offer palliative care input to all patients attending MND clinics and our local MND Association branch highlights hospice services. Yet there appears to be fear and reluctance to accept referral to hospice services until very late.
We obtained a grant from the Department of Health to develop an information and support programme for patients and carers not accessing hospice services, in partnership with the MND Assocaition and two regional MND Care Centres - at Barts and the London Hospital and the National Hospital for Neurology and Neurosurgery. We hoped to provide a non-threatening introduction to our services so that early referral would be welcome, not feared or postponed.
Objectives: To introduce MND patients, and their carers, to local hospice services at an earlier stage in their illness; to decrease anxiety and stress associated with referral to hospice services; to provide information on local community services; to provide opportunity to meet others with MND in a supported environment; to give opportunity to discuss future care options and planning; to offer support and information to carers and build their trust.
Methods: 41 patients and their carers were invited by letter and explanatory leaflet to a 10 week programme of information sessions including Breathing, Nutrition, Mobility, Communication, Future Choices and Carer Support at St Francis Hospice. Free transport was offered and a sitting service to enable attendance at carer sessions. Initially 7 patients accepted places but only 4 patients and 3 carers attended. A questionnaire using a Likert scale to assess effectiveness of this intervention before first session and at final session was completed.
Results: Evaluation of the questionnaires showed that all attendees gained more confidence in local services, had less anxiety about hospice support and felt more empowered to make future care choices. They also gave very positive verbal feedback. Since the programme, all patients have accepted input from hospice services.
Conclusion: Offering a structured programme of information and carer support sessions at an earlier stage in MND may provide a more acceptable introduction to hospice services than referral when needs are high. Our sessions at St Francis Hospice Day Centre confronted, but ultimately reduced anxiety about hospice services, providing a useful, early ‘Foot in the Door’. Poor uptake of places needs further research.
A DVD was made to disseminate information on the programme and to capture the positive experiences of participants and encourage others to attend.
P26 LETTER ON FUTURE CARE; AN INDIVIDUALISED DISEASE-SPECIFIC FUTURE CARE PLAN FOR PEOPLE WITH ALS/MND
HERZ H1, YANG L2, D'ABREW N2, WHITE K2, KIERNAN M3, BUTOW P2
1Prince of Wales Hospital, Randwick, NSW, Australia, 2University of Sydney, Camperdown, NSW, Australia, 3University of New South Wales, Randwick, NSW, Australia
Email address for correspondence: [email protected]
Keywords: advance care directives
Background: Much attention has been given internationally to advance care directives to assist people in planning their future medical care.
An individualised letter expressing patient's wishes for their future care was offered to people with MND from 2001 to 2008. All patients attended a multidisciplinary MND service where they were seen by a palliative care physician. Each letter was drafted and revised over several consultations.
The letter conformed with health care guidelines on advance care planning. The original purpose of the letter was to prevent presentation to the emergency department during the terminal phase. It rapidly developed into a tool to facilitate planning and became known as the Letter on Future Care (LFC).
A series of studies was proposed to evaluate the LFC, focusing initially on the carers’ experience.
Objectives: To test impact and acceptability of the LFC to patients and their carers. To obtain opinions of health care providers on practical issues governing use of the LFC. To develop guidelines for implementation of the LFC.
Methods: Past carers of MND patients were identified through the hospital record: 10 past carers of patients where a LFC was written and 9 where there was no LFC. Semi-structured interviews were held with each carer. Carers were shown a sample LFC. Interviews were analysed using qualitative research techniques.
A questionnaire was developed to elicit a critique of the LFC from a purposive sample of MND health professionals including neurologists, palliative care physicians and nurse specialists. Data were analysed using quantitative and qualitative techniques.
An expert panel was convened to develop the guidelines.
Results: Both groups of carers were generally very supportive of the LFC. Seven principal themes were extracted relating to benefits and suggested changes to the LFC emphasizing the value of the LFC for facilitating acceptance, allowing preparation and promoting autonomy.
Of 81 respondents to the health professional questionnaire, 69 (85%) agreed or strongly agreed that that the LFC would improve patient care.
The expert panel drafted practical and ethical guidelines using carer and health professional feedback.
Discussion: Carers found drafting the LFC empowering and liberating. The final document was valued as tangible evidence of the decisions made during discussions and an assurance that their wishes would be followed.
Health care providers supported the approach. Some critiqued the document for omitting detail of specific treatment and spiritual instruction. There was consensus that the process of drafting the LFC should be undertaken by the health professional who knew the patient best.
Prospective testing of the guidelines is planned.
Conclusions: Advance directives may be most useful when they are proposed by a trusted health professional and developed in cooperation with carers. The best results are individualised and address foreseeable disease-specific events.
P27 A NARRATIVE ANALYSIS OF STORIES OF DYING WITH MOTOR NEURONE DISEASE
O'TOOLE S
University College Dublin, Dublin, Ireland
Email address for correspondence: [email protected]
Keywords: narratives, dying, relatives
Background: There are diverse and conflicting discourses on dying with MND. The dominant discourses are those of the media - a terrible death involving choking and starvation; and the medical community - a peaceful death. To date constructions of dying with MND from the perspective of relatives has received little attention.
Objectives: To explore the experience of dying with MND from the constructions of the relatives of individuals who died with MND.
Methods: A qualitative study using narrative interviews was used to elicit the constructions of dying with MND. The data were derived from the narratives of twenty-one bereaved relatives. A combined thematic, structural and performative analysis of these stories was conducted.
Results: These narratives, characterised by plurality and diversity, revealed no accounts of choking or suffocation at the time of death, although one participant recounted a narrative of a painful death. While almost all of the narratives related accounts of dying quickly, peacefully and without pain, they were interwoven with experiences of suffering that occurred during the long trajectories of dying related by these research participants. Suffering was theorised as being both physical and iatrogenic in origin, related to the intermeshed components of the physical manifestations of MND and to the systems of health care, and the individuals within this system, upon which the dying person and his or her family were dependent.
Conclusion: This study contributed to existing knowledge by focusing on relatives’ narratives of dying which revealed detailed constructions in which dying with MND was considered to encompass the entire disease trajectory. The purpose of this poster is to present the findings of the study. Brief extracts from four of the stories from this data set are used to illustrate different constructions of dying with MND. They highlight the diversity of experiences recounted by the narrators.
P28 A RANDOMISED CONTROLLED TRIAL ON THE EFFECT OF CASE MANAGEMENT ON QUALITY OF CARE, QUALITY OF LIFE AND CAREGIVER BURDEN IN ALS
CREEMERS H1, VELDINK JH2, GRUPSTRA HF1, NOLLET F1, BEELEN A1, VAN DEN BERG LH2
1Department of Rehabilitation, Academic Medical Center Amsterdam, ALS Center the Netherlands, Amsterdam, The Netherlands, 2Department of Neurology, Rudolf Magnus Institute of Neuroscience, University Medical Center Utrecht, ALS Center the Netherlands, Utrecht, The Netherlands
Email address for correspondence: [email protected]
Keywords: quality of life, case management, quality of care
Background: The aim of palliative care in patients with ALS and their primary caregivers is to maintain patients’ health related quality of life (QoL) and to decrease caregiver burden. Proactive, multidisciplinary care is focused on supporting bereavement, symptom control management, decreasing activity limitations and participation restrictions of the patient and on support of the emotional and physical strain of the caregivers. From clinical practice and patients’ and caregivers’ quality of care evaluations we know that palliative care does not always meet the needs of patients with ALS and their caregivers. Additional case management, independent from regular care providers, may improve quality of life for patients with ALS and may reduce caregiver burden.
Objectives: The primary objective was to investigate whether case management improves QoL of patients with ALS. Secondary objective was to evaluate the effect of case management on the caregivers’ burden.
Methods: Participating ALS patients and their caregivers were randomized in either usual care (provided by a specialized multidisciplinary ALS team) plus case management or usual care alone. During 12 months, case management was provided by 2 occupational therapists who guided patients and caregivers through a client centred approach. They visited the patients and caregivers at home at study entry and every three months. Quality of life (the 40 item ALS Assessment Questionnaire/ALSAQ-40) and caregiver burden (Caregiver Strain Index) was assessed by an independent examiner at study entry and after 4, 8 and 12 months. We used generalized estimating equations (GEE) to examine the impact of case management on changes in ALSAQ-40 and CSI over 1 year.
Results: From March 2009 to July 2011, 132 patients with ALS and their caregivers from all regions of the Netherlands participated in our study. The mean age of the patients was 63 (+ 11) years and the mean score on the revised Amyotrophic Lateral Sclerosis Functional Rating Scale was 32 (+ 8) points. Twenty-four percent of the patients had bulbar onset. Seventy-one patients and 66 caregivers participated in the intervention group, 61 patients and 60 caregivers in the control group. Groups were comparable on demographic and clinical characteristics. Preliminary results from a subset of the participants (89 patients with ALS and 86 caregivers) showed no effect of case management on changes in 1 year in quality of life and caregiver strain. In both groups, patients’ ALSAQ-40 total scores increased (reduced quality of life) by 25.2 (SE 2.1) points/year and by 3.8 (SE 1.8) points/year for the ALSAQ-40 domain score Emotional Functioning. In both groups, caregiver strain increased by 2.4 points/year (SE 0.3).
Discussion and conclusions: Our preliminary analysis indicates that case management for patients with ALS and their caregivers does not improve QoL of the patients and does not reduce caregiver burden.
P29 PATIENTS’ AND CAREGIVERS’ PERSPECTIVE ON CASE MANAGEMENT IN ALS CARE
CREEMERS H1, BEELEN A1, SCHIPPER K2, VAN DEN OEVER H2, JANSSENS R2, NOLLET F1
1Department of Rehabilitation, Academic Medical Center/University of Amsterdam, ALS Center The Netherlands, Amsterdam, The Netherlands, 2Department of Medical Humanities, EMGO + Institute, VU Medical Centre (VUmc), Amsterdam, The Netherlands
Email address for correspondence: [email protected]
Keywords: case management, quality of care, qualitative study
Background: The concept of case management has been suggested as an innovative strategy to optimize complex multidisciplinary care in patients with ALS and their caregivers. However, high quality evidence on the effectiveness of case management in ALS care is not yet available. Our ongoing cluster-randomized controlled trial (RCT) on case management in patients with ALS and their caregivers revealed that the extent to which patients and caregivers rely on case management varies considerably (1). Experiences of patients and caregivers with case management and their needs for case management provide insight in preferences for care that may facilitate implementation of case management services for patients with ALS.
Objective: To explore the experiences of patients with ALS and their caregivers with case management.
Programme description: Our qualitative study was nested in a large cluster-randomized controlled trial on the effectiveness of case management on quality of life of patients with ALS and their caregivers. We provided case management to 71 of the 132 included patients in addition to usual care from the multidisciplinary ALS care team. We undertook in-depth, narrative interviews with ALS patients and their primary caregivers who received case management. Interviews were held at the end of the intervention phase of the RCT, i.e. 12 months after baseline assessment.
All interviews were audio-recorded, transcribed and checked for accuracy of transcription. Content analysis methodology was used to initially organize data and subsequently to identify the recurrent themes.
Clinical outcomes: Ten patients with ALS (7 male, mean age; 60.8 years, mean ALS-FRS-R score; 34.9) and their primary caregivers participated in our qualitative study. Interview duration ranged from 60-90 minutes. Three recurrent themes emerged: 1) offering emotional support, 2) professional expertise in ALS care and 3) providing practical support. Home visits and taking the time to sit with participants were highly appreciated. Higher needs for case management appeared to be associated with a limited social network, dissatisfaction with the ALS team, not daring to ask for help, a rapid disease course, the timing of the case management period in the disease course and a limited empowerment of participants.
Recommendations to the field: For patients with ALS and their caregivers, case management can be a valuable adjunct to ALS care. Patient and caregiver input should be included in implementing case management services in complex multidisciplinary ALS care.
Reference
- Creemers H, Veldink JH, Grupstra H, et al. Amyotrophic Lateral Sclerosis 2010;11(Suppl.1):127
P30 THE IMPORTANCE OF DIRECT-CARE HOME ASSISTANCE FOR PEOPLE WITH AMYOTROPHIC LATERAL SCLEROSIS AND THEIR CAREGIVERS: A longitudinal study
PAGNINI F1, LUNETTA C2, ROSSI G2, BANFI P2, MARCONI A2, FOSSATI F2, CASTELNUOVO G1,3, CORBO M2, MOLINARI E1,3
1Catholic University of Milan, Milan, Italy, 2NEuroMuscular Omnicentre (NEMO), Fondazione Serena Onlus, Ospedale Niguarda Cà Granda, Milan, Italy, 3Istituto Auxologico Italiano Istituto di Ricovero e Cura a Carattere Scientifico, Psychology Research Laboratory, San Giuseppe Hospital, Verbania, Italy
Email address for correspondence: [email protected]
Keywords: quality of life, direct-care home assistance, psychological well-being
Background: The importance of home assistance in Amyotrophic Lateral Sclerosis (ALS) is evident, but so far, no studies have investigated with a scientific approach the real impact on psychological well-being of patients and caregivers.
Aims: We aim to evaluate if the presence of a direct-care worker improves ALS patients’ and their caregivers’ quality of life and well-being.
Methods: 40 ALS patients, together with their primary caregivers (a close relative living with patient), completed Beck Depression Inventory (BDI), McGill QOL Questionnaire (MQOL) and State-Trait Anxiety Inventory (STAI); caregivers also filled Zarit Burden Inventory (ZBI) and patients were assessed with ALSFRS. The presence of a direct-care home worker was analyzed. Subjects were followed during the period of one year, assessed every 4 months.
Several statistical analyses were conducted.
Results: Fifteen patient-caregivers couples (37.5%) indicated the presence of a direct-care worker. Comparing subjects with and without home assistance, we found no statistical differences between groups for psychological variables, but ALSFRS was higher in patients with assistance. We conducted MANCOVAs, using ALSFRS as covariate and psychological scores as dependent variables, comparing the two groups. Weighting the effect of ALSFRS, all patients’ and caregivers’ psychological variables were significantly different during time. Subjects with direct-care assistance reported higher scores in MQOL and lower in BDI and STAI and caregivers’ scores of ZBI were lower. Furthermore, the introduction of a direct-care worker in families where it was not present, seems to improve significantly (p from < 0.05 to < 0.01) caregivers’ and patients’ psychological well-being.
Conclusion: With the influence of patient's loss of functions in data analysis weighted, our data indicate that the presence of a direct-care home worker has a positive effect on psychological well-being of ALS patients and their caregivers, improving their quality of life and reducing anxiety, depression and care burden.
P31 ASSESSMENT OF BURDEN OF THE CAREGIVERS OF PATIENTS WITH ALS USING ZARIT BURDEN INTERVIEW (ZBI): STUDY OF CORRELATIONS WITH FUNCTIONALITY, QOL, MOODS DISORDERS AND TECHNICAL AIDS
BRAGA AC1, PINTO A1,2, DE CARVALHO M1,2, DE JESUS C1
1Hospital Santa Maria, Lisbon, Portugal, 2University of Lisbon, Lisbon, Portugal
Email address for correspondence: [email protected]
Keywords: palliative care, caregiver burden, quality of life
Background: ALS is one of the most devastating neurological diseases in adults with unpredictable clinical course. Though many poor prognostic factors are well known, a few recent studies have also shown that the role of physical and emotional burden of the caregiver is an issue that must be addressed and should be part of management by a multidisciplinary team. Several other factors have been identified with low correlation level as predictors of QoL both in patients and caregivers. However, trial designs implemented in single ALS centers with small or low representative samples may have methodological flaws. Therefore, we aim to clarify these issues.
Objective: To evaluate caregiver burden and its impact on patient's quality of life.
Programme description: Observational study in two Portuguese regions (Northern and Southern country), of 39 consecutive caregivers/ALS patients.
Assessment: The two groups: G1 had 20 patients/caregivers from National Referral Center at Lisbon (Southern) and G2 (Northern- Oporto and Coimbra) had 19 patients/caregivers. To measure caregivers’ burden we used the Zarit Burden Index (ZBI). Patients were evaluated with the ALSFRS, the EQ-5D, the HADS and a semi structured interview to evaluate issues regarding team members, palliative care and technical aids used to improve functionality. The interviews were carried out between March 2008 and April 2009. We tested the group homogeneity and analyzed their differences. To find out predictors of caregiver's burden and their impact on patients QoL, we performed univariate and multiple regression analysis weighted by the detected regional differences.
Clinical outcomes: Patients in G1 included: 15 males and 5 females; 16 spinal onset and 4 bulbar onset. Patients in G2 included: 15 males and 5 females; 15 spinal onset and 5 bulbar onset. Mean disease duration was 28 ± 27.7 months in G1 and 57 ± 58.3 months in G2, mean EuroQol-5D was 9.40 ± 1.8 (G1) and 9.95 ± 2.32 (G2), the average age was over 60 years for both groups, with no significant differences regarding socio-demographic and moods data. ALSFRS scores were higher in G1 (24.9 ± 8.66) vs G2 (18.25 ± 9.86) (t-test; p = 0.028). QoL showed a trend related to the amount of technical aids used (p = 0.06) and no other significant relationships to other variables including mood disorders in multiple regression. The caregivers’ relationship to patients were predominantly spouses, mean ZBI was 48.75 in G1 and 52.42 in G2. There were significant regional differences regarding social embarrassment (p = 0.014), lost of social role (p = 0.08), and mood (p = 0.027). We found statistically significant correlations between ZBI and TA (p = 0.05), EQ-5D(p = 0.03) and ALSFRS (p = 0.019).
Conclusions: This study demonstrated the close relationship that exists between the funcionality of patients with ALS, their QoL and mood disorders with the physical and emotional burden of caregivers. It is extremely important to pay attention and prioritise needs of caregivers/patients, in order to drive better care for this population with very special characteristics.
P32 THE REALITY OF ALS CAREGIVERS’ USE OF SOCIAL RESOURCES AND POSITIVE PERCEPTION
IWAKI M1,2, HATONO Y2
1The Fukuoka Medical Committee for Intractable Diseases, Fukuoka Prefectural Government, Fukuoka, 3-1-1 Maidashi/Higashi-ku, Japan, 2Department of Health Sciences, Graduate School of Medical Science, Kyushu University, Fukuoka, 3-1-1 Maidashi/Higashi-ku, Japan
Email address for correspondence: [email protected]
Keywords: home care, family caregiver, positive perception
Background: Researchers tend to focus on negative aspects such as care burden when discussing ALS caregiver's caregiving. Caregivers would have both positive and negative feelings on caregiving but their positive perception of caregiving for ALS patients has not been figured out.
Objectives: The purpose of this study is to examine the way care for ALS patients ought to be by clarifying the reality of caregivers’ positive perceptions of caregiving for ALS patients on each stage of their use of public/non-public social resources.
Methods: We conducted a mail questionnaire survey of 1,000 caregivers who are members of Japan ALS Association and engage in home care now. Questions were composed of the Caregiving Gratification Scale (the range of the scale is 0-24 points)(1) for measuring positive perception, characteristics of patients and caregivers, and the use of public/private social resources. The severity of ALS patients showed mild to moderate-severe or severe in three stages, depending on the degree of disability. We conducted t-test and one-way analysis of variance, and calculated the Pearson product-moment correlation coefficient on each survey item.
Results: 496 questionnaires were returned (response rate 49.6%), among which 371 were valid (valid response rate 37.1%). The average score of the scale of satisfaction with care was 16.9 ± 4.6. We divided its score into three stages and found that the score of moderately-severe ALS patients (those who “require assistance in daily life,” “have difficulty breathing/coughing up phlegm,” and “have dysphagia”) was 15.4 ± 4.6, whose score was statistically significantly lower than other stages of ALS patients. The analysis of moderately-severe ALS patients’ positive perception and use of public/non-public social resources shows that the items of “the use of home help service” and “the number of days home nursing was used” were statistically significant.
Discussion and conclusions: Our research revealed that the score of positive perception among caregivers who care for moderately-severe ALS patients were the lowest. It also suggested that their use of home help service and home nursing contributed to enhance their positive perception of caregiving. We consider it important for caregivers to introduce social resources appropriately by preparing for expected disease progression of ALS. Our study also showed that the score on a scale of ALS caregivers’ satisfaction with care in our research was higher than that of caregivers in charge of “patients requiring long-term care” found in earlier studies. We need to conduct further research to examine whether only caregivers who care for ALS patients have a high positive perception of caregiving.
Reference
- Nishimura M, Suda Y, Campbell R, et al. Journal of Health and Welfare Statistics, 2005;52(7):8–13.
P33 A SURVEY INVESTIGATING THE INTERVENTIONS AND OUTCOME MEASURES USED BY CHARTERED PHYSIOTHERAPISTS IN IRELAND IN THE MANAGEMENT OF PERSONS WITH MOTOR NEURONE DISEASE / AMYOTROPHIC LATERAL SCLEROSIS
RYAN A1,2, COOTE S1
1Milford Care Centre, Limerick, Ireland, 2University of Limerick, Limerick, Ireland
Email address for correspondence: [email protected]
Keywords: physiotherapy, survey, rehabilitation
Background: Varying levels of evidence exist regarding the work of physiotherapists in the care of persons with Motor Neurone Disease/Amyotrophic Lateral Sclerosis. Several international guidelines advise on the assessment and management of respiratory symptoms. Clinical trials and systematic reviews have investigated exercise prescription. Published physiotherapy reviews report on the management of pain and decreasing functional performance. A range of papers have commented on the use of a variety of outcome measurements.
Objectives: This study aims to identify the interventions and outcome measures used by Chartered Physiotherapists in Ireland in the management of persons with MND/ALS.
Methods: Chartered Physiotherapists were invited to complete an anonymous online survey investigating their recent practices with persons with MND/ALS. Responses were converted to an Excel Spreadsheet for analysis and presented as percentages.
Results: Oxygen saturation was the most used respiratory test as was used by 89.7% (26/29) of respondents. In treating respiratory symptoms, the majority of respondents addressed dyspnoea (42/44; 95.5%), secretion management (41/45; 91.1%) and education and training related to Non-Invasive Ventilation (29/44; 65.9%). Respondents identified several variables influencing prescription of exercise, with low intensity exercise being prescribed by most respondents (34/35; 97.1%). Respondents involved in the management of physical pain used a variety of interventions, with all respondents using positioning (45/45, 100%) and passive exercise (44/44, 100%). In addressing patients’ deteriorating functional status, the majority of respondents advised regarding moving and handling (41/42; 97.6%). In measuring outcome, the majority of respondents use the Timed Up and Go (21/40, 52.5%).
Discussion and conclusions: The majority of respondents are using interventions in line with international guidelines in some areas of care (management of respiratory symptoms), but not all areas of care (assessment of respiratory status). In other domains, current research and guidelines are inconclusive (prescribing exercise, managing pain, addressing functional decline).
P34 MANAGING NECK PAIN AND OPTIMISING HEAD SUPPORT IN PEOPLE WITH MOTOR NEURONE DISEASE
TAYLOR E, BARRY F, MORRISON S
St Joseph's Hospital, Auburn, Australia
Email address for correspondence: [email protected]
Keywords: neck and shoulder pain, head control, head supports
Background: Progressive muscle weakness is a characteristic of Motor Neurone Disease. Muscle weakness affects the limbs, and the neck and shoulder muscles that support the head. Weakness of neck and shoulder muscles can contribute to neck and shoulder pain, and cause problems with head positioning and control. The incidence and causes of neck pain and poor head control are not well documented; further, there is minimal literature about methods of optimising head support. Head control and positioning is vital for optimal respiratory function, communication and swallowing - poor control can have a significant negative impact on these and other ADL tasks.
We sought to explore the relationship between neck and shoulder pain, head support usage and satisfaction with head supports in patients treated at St Joseph's Hospital in the western suburbs of Sydney.
Objectives: The aims of the study were first, to review the incidence of neck and shoulder pain, and the characteristics of this pain, since symptom onset. Second, we sought information on the usage of head supports and their effectiveness. Third, we sought to describe the impact that both pain and poor head position have on ADL function. Our final goal was to identify the difficulties people encountered when using the most commonly prescribed head supports.
Methods: Patients currently on the MND register at St Joseph's Hospital were given a questionnaire and underwent a semi-structured interview to obtain information on neck pain, head support usage and difficulties and limitations with head supports.
Results: The results of the patient interviews will be presented. The results support the relatively high incidence of neck and shoulder pain in people with MND. Pain and poor head control had an adverse affect on ADL performance. Current head supports do provide some head control, but adversely affect swallowing, communication and breathing by immobilising the jaw. The feeling of claustrophobia caused by neck supports was also raised. Other identified issues will be discussed, and possible solutions for this issue that affects the quality of life for people with MND will be highlighted.
Discussions and conclusion: Neck and shoulder pain, and poor head control are issues that are common in people with MND. More needs to be done to develop better neck supports that allow adequate head support while not interfering with swallowing, communication and respiration. Knowledge of the information collected by this study will help all who treat people with MND better manage the symptoms of neck and shoulder pain, and the issues surrounding head control in people with MND.
P35 THE POWER OF TOUCH - AN EVALUATION OF A VOLUNTEER MASSAGE PROGRAM PROVIDING A HAND AND FOOT MASSAGE TO PEOPLE LIVING WITH MND
WALLACE D, DALKIC A
Motor Neurone Disease Association of NSW (MND NSW), Gladesville NSW, Australia
Email address for correspondence: [email protected]
Keywords: massage, volunteer, social connection
Background: Gentle massage has been recommended for people with MND to preserve range of motion; ease joint stiffness; and muscular tightness. Many people with MND report regular massages assist with relaxation and improved physical comfort.
During 2010, the MND Association of NSW (MND NSW) recruited and trained volunteers to equip them with the knowledge and skills to provide a simple hand and foot massage. Volunteers then were matched with people with MND to provide regular and ongoing massages.
MND NSW acknowledges the support of the MND Association of Victoria in sharing their experiences of developing a similar massage volunteer program.
Objectives: To evaluate the outcomes of providing a hand and foot massage service to people with MND; volunteers; and the organisation.
Methods: 12 massage recipients and carers were interviewed by phone or email. 10 volunteers were interviewed by phone and attended face to face de-briefing meetings to discuss their experiences. MND NSW staff were interviewed face to face.
Results: Qualitative information gained from the interviews indicates the massage volunteer program has specific benefits for recipients, volunteers and the organisation.
Recipients report temporary physical benefits that included easing of pain, discomfort and swelling as well as increased warmth in hands and feet. Other benefits included feeling calmer and more relaxed. Recipients also reported enjoying social contact with the volunteer as well as their visit giving their carer a break from their caring role. Whilst most received a weekly massage, those who didn't indicated, although grateful for a massage less often, their preference was to have a weekly massage.
Volunteers report providing the massage gives them a social connection with the recipient and an ability to contribute something practical. They have learnt useful massage skills and report enjoying the volunteer massage experience.
MND NSW staff report their connection with those referred to the massage program is enhanced through being able to monitor them regularly through feedback from the volunteers. They also report the additional social support is beneficial for carers. Whilst the organisation has support in place for volunteers to manage grief and loss issues arising, one unexpected issue raised is the impact of ongoing relationships between volunteers and people with slowly progressive MND.
Discussion: Massage cannot reverse or slow the progression of MND but there are benefits not only for people with MND, carers and volunteers providing the massage but also the organisation employing them.
Conclusions: The benefits of providing a volunteer massage service are clear. It enhances the community of care available to people living with MND and MND NSW is now looking at how the program can be developed into regional and rural areas through utilising volunteers employed by other community service providers.