C10 THE ROLE OF PALLIATIVE CARE IN THE MANAGEMENT OF ALS/MND
BRENNAN F
Calvary Hospital, Sydney, Australia
Email address for correspondence: [email protected]
ALS/MND is, from diagnosis, an incurable disease. As such it is a quintessential disease requiring the early involvement of palliative care. A systematic approach to the unfolding nature of the disease, careful planning ahead, meticulous symptom management, a rapid response to complications and clear communication to the patient, family and other health professionals are essential. The benefits of a multi-disciplinary approach to the illness and the importance of good end-of-life care shall be emphasised.
C11 ADDRESSING ISSUES OF SEXUALITY IN TERMINAL DISEASE
TAYLOR B
Oxford Brookes University, and Michael Sobell House, Oxford, UK
Email address for correspondence: [email protected]
Keywords: sexuality, relationships, palliative care
Background: There is a paucity of research that considers the experiences of people with a life-limiting illness in relation to sexuality and intimacy. Research that has explored the meaning of sexuality for this population has tended to focus on cancer (1), and the views of partners have not been identified (2). Apart from studies on sexual function (3), little is known about the impact of MND on sexuality.
Objectives: This qualitative study explores the lived experiences of sexuality and intimacy for people whose life is limited, and their partners.
Method: A Heideggerian, hermeneutic, phenomenological methodology was chosen, and a purposive sampling strategy was employed to recruit 27 ‘patients’ and 14 partners of ‘patients’ living with a life-limiting illness (either terminal cancer or MND). It was not a requirement of the study that people were in a partnered relationship. One-to-one conversational interviews were audio-recorded and transcribed verbatim. Diekelmann and Ironside's (4) seven-stage hermeneutic process was used to analyse the narratives in order to uncover shared meanings.
Discussion of findings: Sexuality is an important aspect of peoples’ lives that means different things to different people. When illness, disease or disability affects peoples’ intimate and sexual relationships, some people are able to adapt and change, whilst others experience significant loss. When life is limited, this presents additional challenges.
This presentation begins with an overview of current research on sexuality and intimacy in palliative care. More detail is then given to illustrate the findings of this study as they relate to people with MND and their partners. For people living with MND, their coupled relationship is affected by a range of factors including bodily changes, disability, equipment that is intended to enable, and impending death. This research has shown that couples experience connecting and disconnecting as they move toward death. Where meaning is shared by both partners, re-connecting is possible. However, not all couples achieve this.
Conclusion: There is more to sexuality than erectile function. Telling people that their sexuality will not be affected does not recognise the psychosocial effects of MND or the practical and emotional interplay that is involved in sexual relationships. There is a role for health and social care professionals in supporting people to manage the changes that occur.
References
- Hordern A, Currow D. Medical Journal of Australia 2003;179:s8–s11.
- Lemieux L, Kaiser S, Pereira J, Meadows L. Palliative Medicine 2004;18(7):630–7.
- Wasner M, Bold U, Vollmer T, Borasio G. Journal of Neurology 2004;251:445–8.
- Diekelmann N, Ironside P. Hermeneutics, In: Fitzpatrick J (Ed) Encyclopaedia of Nursing Research (2nd edition). Springer Publishing Company: New York, 2006. pp. 260–2.
C12 THE ROLE OF PSYCHOSOCIAL PHENOMENA IN THE DETERMINATION OF QUALITY OF LIFE FOR PATIENTS WITH MOTOR NEURONE DISEASE
GIBBONS C1,2, THORNTON E2, EALING J3, SHAW P4, TALBOT K5, TENNANT A6, YOUNG C1
1The Walton Centre for Neurology and Neurosurgery, Liverpool, UK, 2University of Liverpool, Liverpool, UK, 3Hope Hospital, Salford, UK, 4Sheffield Institute of Translational Neuroscience, Sheffield, UK, 5John Radcliffe Hospital, Oxford, UK, 6University of Leeds, Leeds, UK
Email address for correspondence: [email protected]
Keywords: quality of life, depression, coping
Background: Quality of life (QoL) for patients with MND has been commonly found to be unrelated to functional impairment. Whilst some research has been undertaken to evaluate factors that impact upon patient quality of life, to date no research has evaluated the direct and indirect causal links between psychological factors in a structured model for MND.
Methods: One hundred and seven patients with MND completed a suite of six questionnaires containing measures for fatigue, depression, anxiety, coping, functional status, social withdrawal and quality of life. The fatigue, depression, anxiety, coping and social withdrawal scales were modified in order to satisfy the demands of the Rasch model on a separate sample of 298 patients with MND. A hypothesised causal relationship between the study variables was tested using structural equation modeling (SEM).
Results: The final model was shown to have excellent fit characteristics (χ2(5) = 6.06, p = 0.30; CFI =0.99; GFI = 0.98; RMSEA = 0.045). Quality of life (QoL) was primarily driven by strong direct effects from depression (β = -0.47, p < 0.001) and social withdrawal (β = -0.34, p < 0.001) in addition to an indirect effect of coping ability (β = 0.35, p < 0.001), mediated though anxiety (β = -0.39, p < 0.001) and depression (β = -0.36, p < 0.001). Fatigue did not impact directly upon QoL but exerted strong direct effects on anxiety, depression and social withdrawal (p < 0.001). Within this cohort, 7.50% of patients met the HADS criteria for probable depression and 13.10% for probable anxiety.
Discussion: This study highlights the importance of depressive symptomology and social withdrawal in the determination of patient QoL in MND. Coping ability was found to be a strong modifier of both depression and anxiety, and had a strong indirect effect upon QoL. Fatigue was shown to impact strongly upon anxiety, depression and social withdrawal although it did not elicit a significant direct effect upon QoL in this model.
Depression and anxiety are key factors in the determination of patient QoL, even when the majority of patients are not classified as clinically depressed or anxious. Also of key importance to the psychological health and quality of life for people living with MND is the adoption of coping strategies. The results show that patients who have difficulty coping are likely to experience higher levels of depression and anxiety, and resultantly experience poorer QoL.
If quality of life is to be maximised, it is crucial that patients who may have difficulty coping are identified and provided with adequate support and that symptoms of depression are closely monitored and treated accordingly. These results suggest that patients with MND may benefit from psychological counselling or group therapy in addition to their standard care.
C13 SOCIAL SUPPORT AND HEALTH-RELATED QUALITY OF LIFE OF ALS PATIENTS AND THEIR CAREGIVERS
ILSE B1, WALTHER M2, GREINER W3, STRAUSS B3, WITTE OW1, GROSSKREUTZ J1
1Department of Neurology, University Hospital Jena, Jena, Thuringia, Germany, 2Institute of Medical Statistics, Computer Sciences and Documentation, Jena, Thuringia, Germany, 3Institute for Psychosocial Medicine and Psychotherapy, Jena, Thuringia, Germany
Email address for correspondence: [email protected]
Keywords: health related quality of life, caregiver, caregiver load
Background: In ALS the social and psychological strains on patients and caregivers are often profound. However, it is unclear whether social and economic factors independently determine burden and quality of life of both patients and caregivers.
Objectives: To test the validity of a three-dimensional model integrating Health related quality of life (HRQoL) and the self-estimated social support with disease severity of ALS patients and their caregivers in Thuringia; and to identify independent predictors of these three aspects of ALS disease course.
Methods: We analyzed responses of patient-caregiver couples, house calls and self-help groups. To describe disease severity we used the ALSFRS-R and the Barthel Index. The EQ5D (HRQoL), BDI, SF 36 and F Sozu K14 scales were obtained from both patients and caregivers to measure both quality of life and degree of social support. To exclude manifest frontotemporal dementia, patients completed the FAB and the MMST. Caregiver burden was defined as the inverse of the ALSFRS-R of the corresponding patient as the ‘caregiver load’. In every couple we collected distinguishing data about the patient and caregiver relationship, the amount of personal funds spent on the disease and the living conditions determined by available living space per occupant.
Results: 24 patient- caregiver couples completed the study. The particular results for the scales are ALSFRS-R (average 28.0 ± SD9.5) and ‘caregiver load’ (20.0 ± 9.5). The other scores for the patients/ caregivers were: EQ5D Index (25.5 ± 26.4)/(79.0 ± 17.3), F Sozu K14 (4.3 ± 0.6)/ (3.9 ± 0.9) and BDI (16.4 ± 9.3)/ (9.9 ± 6.7). The values of the ALSFRS-R are distributed significantly among all items of the EQ5D except pain/ discomfort in the patients. However, the ‘caregiver load’ showed no significant distribution in any item of the EQ5D. A univariate multiple analyses identified social support and severity of illness as significant impact factors on the HRQoL in ALS patients.
Discussion and conclusions: There are a number of impact factors on HRQoL in patients and caregivers who suffer from the multisystem disease ALS. We identified social support and severity of illness as two of them. The items of the EQ5D may be too unspecific to prove our definition of ‘caregiver load’ as a valid variable to recognize the burden of the caregivers. The separation of the ‘caregiver load’ in subgroups of the ALSFRS-R items may be a possible solution; however, it is more likely that caregiver burden must be derived from all three dimensions of our model. Further studies are required to identify independent components of these three dimensions with regards to perceived ALS disease course. Caregivers should be considered as patients’ second order.
C14 PATIENT DECISION-MAKING IN MOTOR NEURONE DISEASE: THE VIEWS OF HEALTH PROFESSIONALS
Hogden A1, Greenfield D1, Nugus P1, Kiernan M2
1Centre for Clinical Governance, Australian Institute of Health Innovation, University of NSW, Sydney, NSW, Australia, 2Prince of Wales Clinical School, University of NSW, Sydney, NSW, Australia
Email address for correspondence: [email protected]
Keywords: patient decision-making, multidisciplinary care, barriers and enablers
Background: Multidisciplinary management of Motor Neurone Disease (MND) requires patients to make numerous decisions for their healthcare throughout the duration of the disease. However, the rapid progress of physical and cognitive symptoms present challenges to timely decision-making (1). While these challenges are well known, there has been little investigation of the way MND clinical teams engage patients in decision-making for their care. Gaining such knowledge can promote stronger patient involvement in decision-making.
Objectives: The aim of the study was to explore the enablers and barriers to patient decision-making in MND care, from the perspectives of health professionals.
Methods: A focus group was conducted, using a semi-structured schedule to explore health professionals’ experiences in patient decision-making. The issues discussed were derived from an in-depth review of the literature and opinion from experts in the field. Seven health professionals were recruited from a multidisciplinary, inter-service team specialising in MND care. The team was comprised of medical and allied health staff from three health services: palliative care; community-based rehabilitation and the Motor Neurone Disease Association of NSW (MNDA NSW). Transcripts were thematically analysed.
Results: Proactive partnerships between the patient, carer and the multidisciplinary team were thought to provide an environment for optimal and timely decision-making. However, decision-making remains hampered by the limited number of evidence-based treatment choices, and a lack of MND-specific resources for decision support. Five barrier groups to patient decision-making were identified: MND disease characteristics; limited evidence-based treatment options; quality and timing of information provision; access to multidisciplinary services; and the patient response to the diagnosis. Decision-making was seen to be enabled by prompt referral to an MND specialist clinic, early provision of MND-specific information, and early discussion of future care between the team, patient and carer. There was agreement on all barrier and enabler themes across palliative care, rehabilitation and MNDA staff groups.
Discussion and conclusions: Health professionals experienced in MND multidisciplinary care were able to identify specific enablers and barriers to patient decision-making. Reducing the barriers and identifying the enablers promotes improvement in the timing and quality of decisions. This exploratory study provides new empirical evidence for both generalist clinical teams and specialist MND services to better engage MND patients in healthcare decisions. The findings need to be compared with the perceptions of patients and their carers on the decision-making process.
Reference
- Mitsumoto H, Bromberg M, Johnston W, et al. ALS 2005;6:145–54.
C15 DO HEALTH PROFESSIONALS CARING FOR PEOPLE LIVING WITH MOTOR NEURON DISEASE RECOGNISE THEIR OWN COMPASSION FATIGUE?
MARSDEN R
MND Care Centre, Oxford, UK
Email address for correspondence: [email protected]
Keywords: compassion fatigue, compassion satisfaction, burnout, health care professionals
Background: The diagnosis of ALS is unequalled in its devastating impact. As well as drastically shortening life of the sufferer, the physical and emotional damage that ensues, ripples outwards to involve family and friends. This aspect of ALS may partially explain why healthcare professionals can become highly emotionally involved with their patients. Whilst the majority find this a rewarding aspect of their work, one concern is that professionals may sometimes find it hard to compartmentalise these complex emotions in the context of the inevitable challenges that arise in their own personal lives outside work. Lack of awareness of a growing inability to cope can be potentially very harmful to personal and professional relationships. This study explores the concept of ‘compassion fatigue’ and ‘burnout’ and asks if healthcare professionals are able to recognise it in themselves, and if so, how they might try to manage it.
Method: A self reporting questionnaire (ProQOL), which assesses symptoms of compassion fatigue and professional quality of life, was distributed to 62 health care professionals caring for ALS patients using an online tool (www.surveymonkey.com).
Results: There was an overall response rate of 73%, (doctors 76%, nurses 62%, Care Centre Coordinators 93% and Regional Care and Development Advisors 68%). No individual from any professional group recorded a high score in measures of compassion fatigue or ‘burnout’, nor did they register a low score for compassion satisfaction. Health care professionals were good at identifying personal levels of compassion fatigue, burnout and compassion satisfaction. Over 90% of respondents said they valued informal support from a workplace colleague.
Conclusion: The results of this study would suggest that participants generally have a good understanding about their own levels of compassion fatigue, burnout and compassion satisfaction. This implies that an increase in awareness of the concepts of compassion fatigue and burnout might facilitate health care professionals in the accurate prediction of their own levels of compassion fatigue and enable them to take measures to evade it. Having a clearly defined support network among colleagues, and opportunities for formal debriefing after challenging cases are ways in which compassion fatigue can be avoided.