C46 THE IMPACT OF MOTOR NEURON DISEASE ON CARERS AND THEIR EXPERIENCE OF SERVICE PROVISION: A SYSTEMATIC REVIEW AND DEVELOPMENT OF A DISEASE‐SPECIFIC QUESTIONNAIRE
Mockford CA, Jenkinson CP & Fitzpatrick R
Health Services Research Unit, University of Oxford, Oxford, UK
E‐mail address for correspondence: [email protected]
Background: Carers of people with motor neuron disease may find their dedication affects their health and lifestyle, which may prevail beyond the patients' death. Health and social services, as well as voluntary organizations, are able to assist and support the carer in various ways. Research can help identify the needs of carers thereby improving service provision and possibly the experience of the carer.
Objectives: To develop a questionnaire which will 1) examine the impact of caring on the health of carers, 2) examine the relationship between self reported patients' health (ALSAQ‐40) and that of the carers, 3) examine the extent that service provision can reduce the demands upon carers and consequently benefit their health status.
Methods:
Review. Both quantitative and qualitative research was collected for the 10‐year period from 1994 to 2004. Searches were made from online databases, grey literature and personal communications to authors. Thirty‐two key texts were retrieved in total.
Qualitative study. Recruitment took place via a specialist MND clinic in the UK. Thirty‐seven carers were approached by mail and 23 agreed to participate. Twenty‐two were interviewed individually and 11 attended focus groups. All discussions were transcribed verbatim and analysed using a qualitative software package.
Questionnaire. Questions were devised from the themes which emerged from the analysis.
Results:
Systematic review. For the period 1994–2004 nearly two‐thirds of studies did not use standardized questionnaires and much of the evidence collected is descriptive and diverse. Due to the nature of the disease, many sample sizes are small (58% have sample sizes ⩽50) and this makes generalization difficult. A disease‐specific questionnaire may improve the overall quality of research and allow for comparison between studies.
Qualitative study. Themes were identified concerning employment; assisted daily living and use of equipment; finances and expenses; mental and physical health; social support, social activities and quality of relationship with patient. Issues with service provision include diagnosis; value of information given; voluntary organizations and support groups; health professionals and respite care. There are also issues about being identified as a carer and looking after themselves while caring for someone else.
Questionnaire development. A questionnaire has been developed and in response to a draft and a pilot questionnaire survey, alterations regarding layout and wording of some questions have been made. A long form questionnaire has been developed and a large scale postal survey is being undertaken to determine the questionnaire's measurement properties and to refine the instrument and scoring algorithms.
Discussion and conclusions: The systematic review has shown a paucity of written documentation on the experience of looking after someone with MND. Data collected are diverse and sometimes contradictory. Comparison across studies is difficult due to the diversity of instruments and styles used. Sample sizes are often small and generalization is difficult. The review confirmed a need for a disease‐specific questionnaire for carers. A disease‐specific questionnaire is in the process of being developed which will further the understanding of the carers' experience of looking after someone with MND.
C47 THE IMPACT OF ENTERAL NUTRITIONAL SUPPORT ON THE QUALITY OF LIFE OF ALS PATIENTS AND THEIR PRIMARY CAREGIVERS
O'Farrell BM, Strong MJ, Zou GY, Rowe AM & The ALS Research Consortium of Canada
1London Health Sciences Centre, London, and2University of Western Ontario, London, Canada
E‐mail address for correspondence: [email protected]
Background: The implementation of enteral feeding is a standard of care in the treatment of ALS, yet this support is often left until late in the course of the illness. Perhaps because of this, the impact of enteral nutrition on survivorship remains controversial, and the benefit of enteral nutritional support may not necessarily be found in an enhanced survival but rather in an enhancement of quality of life.
Objectives: The purpose of this study is to determine if the implementation of enteral nutritional support affects 1) the quality of life of ALS patients, and 2) the caregiver burden and/or the quality of life of caregivers.
Methods: A multicentre, prospective, cohort study was conducted. A total of 64 patients with clinically definite ALS (24 of whom subsequently had a feeding tube inserted) completed a general quality of life measure (SF‐36), a generic health status measure (Euro QoL EQ‐5D), a mental health instrument (Hospital Anxiety and Depression Scale), a mastery instrument (Locus of control), and a disease specific physical functioning instrument (ALSFR‐S) at the first clinical visit. About six months later, at the second visit, a total of 50 patients (20 had a feeding tube in situ) completed these instruments. Data in the aforementioned instruments were available for 57 and 46 caregivers at the first visit and the second visit, respectively. In addition, the caregivers also completed the Zarit Burden instrument.
Results: At the fist visit, patients who subsequently had a feeding tube inserted had significantly lower Mental Health scores (SF‐36) (difference −12.08, 95% CI −21.09 to −3.06). At the second visit this difference disappeared, at which time the patients with a feeding tube had higher anxiety scores than those without tubes (difference −1.63, 95% CI −3.22 to −0.05). Also, at the second visit, the patients with a feeding tube had lower locus of control scores (suggesting a more internal locus of control), with the difference between the two groups of 3.85 (95% CI 0.56–7.14). There was no significant difference between the two groups in terms of other quality of life scores. There were no group differences for the caregivers at the first visit. However, at the second visit, the caregivers of patients with a feeding tube had significantly higher EQ‐5D scores (difference 0.094, 95% CI 0.001–0.187) and higher depression scores (difference 0.968, 95% CI 0.062–1.874) than caregivers of patients without feeding tubes.
Discussion: Insertion of a feeding tube in patients with ALS is associated with an internal locus of control in the patient (the belief that one can control what happens to him/her) and an increased quality of life in the caregivers. However, there is increased patient anxiety and depression in the caregiver.
Acknowledgement
This research was supported by ALSA
C48 CAREGIVER TIME USE: A PILOT STUDY IN AMYOTROPHIC LATERAL SCLEROSIS
Chiò A, Gauthier A, Vignola A, Moglia C, Calvo A, Ghiglione P & Mutani R
Department of Neuroscience, University of Torino, Turin, Italy
E‐mail address for correspondence: [email protected]
Background: The impact of ALS is not limited to the patients: in fact, as the disease becomes more severe, the patients become increasingly dependent on caregivers. The ALS caregivers' burden has been demonstrated to be related to patients' clinical disability and on caregivers' psychological factors, such as depression. Recently (1) we have found that the most impaired domain of the Caregiver Burden Inventory (CBI) was the Time‐Dependence burden, indicating that ALS caregivers are mostly affected by the amount of time they have to spend in caring. Surprisingly, no studies have been performed devoted to the analysis of caregiver time use in ALS.
Objective: To evaluate the amount of caregivers' time needed for caring for the patients, relating it to patients' disability.
Methods: The amount of time spent for caregiving was evaluated with the Caregiver Activity Time Survey (CATS) (2), an instrument that analytically assesses the time of caring in nine domains (feeding, toileting, bathing, dressing, administering medications, supervision, housekeeping, transportation, other tasks). The caregivers are asked to indicate the total time (hours and minutes) spent for caregiving in a typical day. Patients' disability was evaluated with the ALS‐FRS scale. Statistical analysis was performed with multiple regression analysis.
Results: A total of 70 ALS patients were included in the study (28 females, 42 males; mean age, 61.3 years (SD 10.6); mean disease duration 48.8 months (SD 38.3)). The mean number of caregivers for patient was 1.99 (SD 1.3; range 1–8)). There were 53 spouses, 50 children, 16 paid caregivers, six parents, and seven other relatives. The mean time spent for caregiving was 570 minutes per day (SD 512; range 15–3051). The activities which needed more time were housekeeping (156 minutes per day), toileting (83 minutes), and feeding (74 minutes). The total time spent for caregiving was significantly related to patients' disability (r = 0.48, p = 0.0001). Interestingly, the highest correlation was found with lower limbs disability (r = 0.47), the lowest with bulbar disability (r = 0.24). Regarding the CATS domains, only toileting, bathing and dressing were significantly related to the total time paid in caregiving. No relationship was found between patients' age or disease duration and caregiving time.
Conclusions: This is the first study which has analysed the caregiver time use in a large population of ALS patients. The amount of time spent in caregiving was related to patients' disability. In particular, it was mostly related to lower limbs disability, indicating that the loss of independence due to the inability to walk and stand has a major impact on the needs of care. This study suggests the importance of the caregiver component of the disease, as assessed by the CATS, as a relevant, albeit indirect, measure of outcome for potential therapies for ALS.
References
- Chio et al. Neurology 2005;64(10): 1780–2.
- Davis et al. Int J Geriat Psychiatry 1997; 12(10):978–88.
C49 ENGAGING SOCIAL SUPPORT SYSTEMS TO IMPROVE QUALITY OF LIFE FOR PATIENTS AND CARERS
Ray RA, Street AF & Love AW
La Trobe University, Melbourne, Australia
E‐mail address for correspondence: [email protected]
Background: The availability of a strong supportive care network for people living with life limiting illness has been positively correlated to reduced stress and burden (1–3).
Objectives: This study examined the availability and importance of support networks to family carers of people living with ALS/MND.
Methods: Seventy‐five family carers participated in the carer network scale mail‐out survey, and 14 primary carers were interviewed face‐to‐face, three times over a 10‐month period. One‐way analysis of variance was undertaken across all items of survey data. Interview data were analysed using NVivo software with the first two levels of grounded theory being applied to frame the analysis.
Results: Statistical significance was apparent across all survey items, however the length of time caring was the main predictor of loss of support and sense of burden. Reductions in social support include items such as: ‘caring restricts my social life’ (p<0.038); ‘caring causes difficulties in relationships with friends’ (p<0.013); ‘relatives don't keep in touch as often as I'd like’ (p<0.006). Coded interview data supported these findings and provided further detail about the circumstances and situations that precipitated the loss of social support.
Conclusions: These results suggest that caregiving requirements impact on people's ability to preserve the relationships necessary to maintain their quality of life and the standard of care they can give to the person living with ALS/MND. Assessment of the psychological and social supportive care needs, as well as the physical needs of carers, is therefore integral to effective care management.
References
- Cannuscio CC, Colditz GA, Rimm EB, Berkman LF, Jones CP, Kawachi I. Employment status, social ties, and caregivers’ mental health. Social Science & Medicine 2004;58:1247–56.
- Grbich C, Parker D, Maddocks I. The emotions and coping strategies of caregivers of family members with a terminal cancer. Journal of Palliative Care 2001;17:30–6.
- Perreault A, Fothergill-Bourbonnais F, Fiset V. The experience of family members caring for a dying loved one. International Journal of Palliative Nursing 2004;10:133–43.
C50 ATYPICAL FEATURES IN PATIENTS WITH ALS AND THEIR IMPACT ON CAREGIVER BURDEN: FINDINGS FROM THE ALS PATIENT CARE DATABASE
Pioro EP1, Malone S2 & Anderson FA2
1Cleveland Clinic Foundation, Cleveland, and 2University of Massachusetts, Worchester, USA
E‐mail address for correspondence: [email protected]
Background: Some patients with amyotrophic lateral sclerosis (ALS) develop atypical features, which indicate extra‐motor abnormalities. The frequency in a large population of patients with ALS is unknown, as is whether their occurrence influences ease of diagnosis, disease course, and caregiver burden. The ALS Patient Care Database collects information on ALS from physicians, patients, and their caregivers, including atypical features and caregiver burden.
Objectives: To determine the frequency of atypical features in ALS patients enrolled in the ALS Patient Care Database between 1995 and 2004, and examine their influence on ALS diagnosis and caregiver burden.
Methods: Information on 4398 patients with sporadic (SALS) or familial (FALS) ALS was analyzed to characterize the: 1) frequency of atypical features; 2) delay to diagnosis; and 3) caregiver burden, based on the Caregiver Burden Score, which is derived from self‐reports of caregivers to 17 questions that quantify the burden of caring for the patient.
Results: ALS was sporadic in 4114 (94%) and familial in 284 (6%) patients. One or more atypical features were reported in 658 (17%) patients with SALS and in 53 (20%) patients with FALS. Comparison of SALS and FALS patients, respectively, revealed one atypical feature in (13%, 13%), two atypical features in (3%, 5%), and three or more atypical features in (1%, 1%). No significant difference was seen in the frequency of atypical features between SALS and FALS groups: sensory dysfunction (6%, 8%), cognitive change (4%, 5%), bladder dysfunction (2%, 3%), ataxia (2%, 2%), extrapyramidal features (1.5%, 1%), autonomic dysfunction (<1%, 0%), and ‘other’ (8%, 11%). Duration from symptom onset to diagnosis was longer in patients with atypical features (p = 0.01). Caregiver burden was significantly greater if patients had atypical features of cognitive change (p = 0.0003) and bladder dysfunction (p = 0.003) and did not reach significance if extrapyramidal (p = 0.05) or other features (p>0.05) occurred.
Conclusion: About 20% of patients with ALS have atypical features, most commonly sensory dysfunction and cognitive change. Although not reaching significance, these tend to be more frequent in FALS patients. Diagnosis of ALS was significantly delayed if patients had atypical features suggesting more uncertainty in making a diagnosis. Burden on the caregiver is greater when atypical features are present, especially with conditions necessitating more intervention and supervision such as cognitive impairment and bladder dysfunction. Attention to these findings by health care professionals and caregivers may improve care for patients with ALS, and patient‐caregiver interactions.