The European Journal of Public Health Advance Access originally published online on September 1, 2007
The European Journal of Public Health 2008 18(3):323-328; doi:10.1093/eurpub/ckm085
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Miscellaneous |
Increased work-load associated with faecal incontinence among home care patients in 11 European countries
H. Finne-Soveri1,2, L. W. Sørbye3, P. V. Jonsson4, G. I. Carpenter5 and R. Bernabei6
1 National Research and Development Centre (STAKES).
2 Social Department of the City of Helsinki, Finland.
3 Diakonhjemmet University College, Oslo, Norway.
4 University of Iceland, Landspitali-University Hospital, Reykjavik, Iceland.
5 The University of Kent, Canterbury, Kent, UK.
6 Facoltà di Medicina, Università Cattolica del Sacro Cuore, Rome, Italy.
Correspondence: Harriet Finne-Soveri MD, PhD, Senior Researcher and Senior Medical Officer, STAKES, P.O.BOX 220, Helsinki 00531, tel: +358 50 3809885, fax: +358 9 39672485, -mail: harriet.finne-soveri{at}stakes.fi; harriet.finne{at}pp.inet.fi
Received February 4, 2007, accepted July 5, 2007
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Abstract |
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The plurality of definition of faecal incontinence (FI) complicates the cross-national comparisons between studies conducted in the area. The aim of the study was to investigate work-load and subjective care-giver burden associated with FI, among home-care patients, in Europe. Design and methods: In this cross-sectional retrospective study, a random sample of 4010 RAI-HC assessments were collected during 2001–02 from home care patients aged 65 years and over (74% females; age 82.8 ± 7.2 years) in Czech Republic, Denmark, Finland, France, Germany, Iceland, Italy, The Netherlands, Norway, Sweden and United Kingdom. Results: Of the 4010 individuals, 411 (10.3%) suffered from FI (range 1.1–30.8% from site to site). The factors significantly associated with faecal incontinence were diarrhoea [odds ratio (OR) 10.3, 95% confidence interval (CI) 6.590–15.96], urinary incontinence (OR 3.99, 95% CI 2.991–5.309) and pressure ulcers (OR 3.15, 95% CI 2.196–4.512) together with severe impairments in physical (OR 4.25, 95% CI 2.872–6.295) and cognitive (OR 3.76, 95% CI 2.663–5.304) functions. High use of working hours of the visiting nurses (OR 2.04, 95% CI 1.221–3.414) and home health carers (OR 2.40, 95% CI 1.289–4.470) were additionally associated with faecal incontinence. Use of five or more medications was an inversely associated with FI (OR 0.62, 95% CI 0.473–0.820). Conclusions: The additional work load associated with faecal incontinence comprises considerable numbers of formal health care hours and should be taken into account when planning home health services for the older in home care patients.
Keywords: Europe, faecal incontinence, formal and informal care, home care, health politics
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Introduction |
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Faecal incontinence (FI), among community dwelling older individuals, is a silenced problem.1,2 Its prevalence varies from 0.4% to 24.9% depending on inclusion criteria, definition(s) for incontinence, and time-frame used for observation.3,4 With accumulating age the prevalence of FI has been argued to remain unchanged,5 to increase in men only,6 or to increase in both sexes.7–10 There are studies reporting FI equally often in men and women7,10,11 or more often in women.12
Apart from obstetric history, FI has been shown to associate with medical comorbidity,9,13,14 obesity,15–17 depression9,13,18 or other psychiatric comorbidities,19 or use of psychotropic medications.14 Impaired physical,12 or cognitive function,13,15 in addition to conditions like pain, urinary incontinence or diarrhoea9,12,13 have been shown in connection with FI. Individuals with this condition often experience poor health status13 and/or quality of life.11,17,20–22 Severe FI also leads to physician consultations.21
The studies about faecal incontinence among the older subjects receiving home care services are sparse.10 There is a reason to believe that any type of incontinence might underlie increased demands for urgent home care or even institutional care.23 However, the studies about objective work-load or subjective feelings of care burden associated with FI are very few or none.
We, therefore, investigated whether FI has an independent association with work-load and care-giver stress in the presence of multiple diseases and impairments in home-care agencies located in 11 European countries.
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Data and methods |
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The retrospective data were derived from the Aged in the Home Care (AdHOC) study, funded by European Union under the fifth frame work. This cross-sectional sample was collected during 2001–02 from 11 sites, each located in one European country and it consisted of 4010 assessments of subjects aged 65 years and over. The countries were: Czech Republic, Denmark, Finland, France, Germany, Iceland, Italy, the Netherlands, Norway, Sweden and the United Kingdom. The samples in each of the countries were collected from an urban area and the participating home care patients were randomly selected from home care agencies that served a certain geographical area. In the total sample, 1036 subjects (25.8%) were men and 2974 (74.2%) women. The mean age of the patients was 82.3 years ± 7.3 (in males 80.9 ± 7.5 and in females 82.8 ± 7.2).
The data collecting method was Resident Assessment Instrument for home-care (RAI-HC version 2.0), a well validated and reliability tested questionnaire24 containing around 350 variables. In each of the sites, the nurses were uniformly, in each of the countries, educated how to use the questionnaire with the help of the manual25 and each of the patients was assessed once. In addition to interviewing and observing the patients, data were collected from the medical and nursing documents, from his/her caregivers including the home-care professionals. The design of the whole Ad-HOC study has in detail been described by Carpenter et al. in 2004.26
Informed consents were sought from the participants according to legislation in each of the countries and the same applied to the ethical approvals.
Faecal incontinence, in the RAI-HC (2.0)-questionnaire, is defined as capacity of controlling bowel movements according to following classification— 0: continent, 1: continent with ostomy, 2: incontinent less than once over the last 7 days, 3: incontinent episode(s) once over the last 7 days, 4: two or more incontinent episodes over the last 7 days, 5: incontinent all times during all days and 6: no bowel movements during last 7 days.25 In the current analyses, we considered involuntary bowel movements once a week or more often as incontinent; thus, absence of bowel movement during past 7 days was considered continent.
Potential factors significantly associated with FI are presented in table 1. All the diagnoses were taken from the official records. Obesity was defined as ‘obesity of such a degree as to interfere with normal activities, including respiration according to the MDS manual’.25 To assess depression, Depression Rating Scale (DRS, scale 0–14) was constructed and if scored 3 or more, suspicion of clinical depression was stated according to Burrows et al. in 2003.27 The scale consists of seven items: sadness, persistent anger, unrealistic fears, repetitive health complaints, other repetitive concerns, worried facial expressions and crying. Functional capacity was determined by constructing hierarchical ADL-scale (score 0–6, where 0 = independent and 6 = totally dependent).28 Cognition was assessed by using Cognitive Performance Scale (CPS, scale 0–6, where 0 stands for normal, and 6 for very severe impairment).29 The former scale is based on self-performance in the following tasks: mobility, eating, toilet use and personal hygiene, whereas the latter scale consists of short-term memory, decision-making skills, being understood by others, self-performance in eating and level of consciousness. After testing the association between FI and the scales, both ADL and CPS were divided into three categories: no impairment, mild to moderate impairment and severe impairment.
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Statistical analyses
All statistical analyses were performed by using SAS version 8.2 (SAS Institute, Cary, North Carolina, USA). The statistical analyses were performed step by step. Chi-squared tests for dichotomous and t-tests to test the significance for means for continuous variables were used to determine the significant association between each of the chosen variables and with FI. After that series of multiple logistic regression models were created, where FI (dichotomous) was used as a dependent variable, and those clinical variables that were found significant in the univariate analyses [95% confidence intervals (CI), P < 0.05] were used as independent variables. Rather than using a single stepwise analysis, multiple analyses were made to test the strength of each of the significant variables. For the final model, those continuous variables that represented working time were divided into three categories in such a manner that each categorical variable consisted of (i) no care-time needed (ii) moderate care-time needed and (iii) plenty of care-time needed. Then dummy variables were created for each of these categories before adding the significant clinical variables into the model. The sites with low prevalence of FI were clustered together for the final multivariate model.
Two separate new multivariate regression analysis models were then created to further test and confirm the relationship between FI and work-load. First, high use of home health carers’ time was used as dependent variable and FI together with other variables that were independently associated with FI were used as independent variables. Then, the same procedure was repeated using high use of visiting nurses’ time as dependent variable.
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Results |
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The prevalence of faecal incontinence among home-care patients according to sex and site is given in the table 1, where a range from 1.1% to 30.8% (overall 10.3%) from site to site can be observed. Of those 411 individuals with FI, 24.1% suffered from it once a week, not more often, 23.8% two or three times a week and 52.1% were suffering from daily FI. For women, the corresponding figures were 27.3, 22.9 and 49.8 and for men 16.1, 26.3 and 57.4, accordingly.
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Table 2 shows the results of the univariate analyses, where nor age or sex were related with FI. On the contrary, strong relationship was found between FI and diagnoses like stroke, dementia and Parkinsonism (each P < 0.0001) and consequently, between FI and cognitive or physical impairment. Similarly, an association was found between FI and conditions often seen in persons suffering from dementia or stroke; those are urinary incontinence, delusions, signs of depression and behavioural problems (each P < 0.0001. Strong association was equally found between FI and diarrhoea, pressure ulcers, fever, terminal prognosis and any pain (each P < 0.0001). In addition, between FI and use of hypnotic and anti-psychotic medications a strong association was found.
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The mean care time in hours for each group of professionals was greater in patients with FI than in patients without FI; the mean number of hours allocated by home health carers was 3.98 (SD 12.3) versus 1.70 (SD 4.64), by the visiting nurses 1.93 (SD 4.99) versus 0.79 (SD 3.51), by the homemaking helps 2.68 (SD 10.0) versus 1.39 (SD 3.14) and by the informal care-givers 38.83 (SD 48.9) versus 18.36 (SD 38.7). The mean number of total care hours was significantly higher among patients with FI compared to those who did not suffer from FI (39.0 h versus 18.4 h, P < 0.0001). Table 2 shows the dichotomized care time (0 = no care time, 1 = any number of care minutes) and the use of other services. Of the 1220 patients who lived with the care-giver, 90.6% were living with spouse or child. Figure 1 shows the increase in occurrence of FI according to worsening cognition and physical function, and table 3 the results of the final multivariate model.
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In table 3, the final result of multiple logistic regression analysis is presented. During the stepwise process, every variable presented in table 2 was tested. The association between FI and most of the diagnoses turned out weaker than the severity of dementia or degree of physical impairment. The same also happened to the significance between FI and psychotropic medications, care-giver burden and the time informal care-givers allocated to their patients. Table 3 presents all the variables with the independent association with FI. The C-statistics of the model was fairly high, 0.913 (Hosmer–Lemeshow Goodness-of-fit test: chi-squared test 9.4578, df 8 and P >
2 = 0.3052). When an additional multiple logistic regression model was created using high work-load of the visiting nurses (5 h/week or more) as dependent variable, faecal incontinence explained the working time[odds ratio (OR) 1.86 95 CI 1.217–2.848] even when adjusted with physical and cognitive impairments, site, age and sex. The same was true, when high work-load of the home health carers (5 h/week or more) was used as dependent variable; FI similarly explained the working hours (OR 2.23, 95% CI 1.337–3.726) when adjusted for the same variables, correspondingly. |
Discussion |
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TopAbstractIntroductionData and methodsResultsDiscussionConclusionsAcknowledgementsReferences |
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The current study is, according to the authors’ knowledge, the first of its kind: a cross-national study performed in 11 European countries, where informal care-giver burden and care time, together with formal care-hours allocated to home care patients according to the presence or absence of faecal incontinence were investigated.
The results showed overall prevalence of 10.3% for weekly or more often occurring faecal incontinence with a 30-fold variation of it, from site to site (1.1–30.1%). The health professionals addressed more of their care-time to patients with FI than to patients who were continent; FI was associated with high but not moderate number of visiting nurses’ care hours, and with high and moderate number of home health aids’ care-hours indicating heavy work-load for formal health care services. However, household services including various kinds of home making services were equally often performed for those with and without FI when adjusted for confounders. These findings held true disregarding whether there was any expressed informal care-giver burden present, or whether the primary care-giver was living with the client or not. Most important entities associated with FI were severe functional and cognitive impairments. Also, presence of pressure ulcers, urinary incontinence and diarrhoea were associated with FI when adjusted for confounders. Polypharmacy had an inverse association with FI.
Overall prevalence of FI, among community living adults, has been ranging from 0.7% to 1.4% depending on whether FI was considered major or minor.30 According to a meta-analysis by Pretlove et al. (2006)10 occurrence of FI was 0.8 in men and 1.6 in women when all aged 15–60 years were included, which accords well with the finding of 2.2% prevalence by Nelson et al. (1995).12 However, if the consistence of stools is taken into account (solid versus liquid) differences in prevalence of FI range from 2% to 9%.31 With increasing age higher prevalence values among community dwelling population have been found; in the meta-analysis by Pretlove et al. (2006),10 occurrence of FI in those aged over 60 years was 
5% in men and 6% in women. According to Roberts et al. (1999),6 prevalence of faecal incontinence kept on rising from 8.4% among men in their 50s to 18% among men in their 80s and the corresponding change among women in the same age-groups was 13–21. In a population-based study by Varma et al. (2006),17 investigating females aged 40 years and over, annual prevalence of FI was 24%, whereas monthly occurrence of it was 3.4%, in the same study. In the current study, mean prevalence of weekly or more often occurring FI was 10.3% which seems to be 2-fold compared to a study by Johansson and Lafferty (1996)32 with a weekly prevalence of FI of 4.5%. This finding accords with the knowledge that in the home-care population, the frailest of the community dwelling individuals and those with most comorbidities, are represented. The plurality of definitions for FI with high variance in time windows complicates the comparisons between previous studies concerning this issue, which makes the current comparison between home care patients in 11 European countries unique.
Of the associated conditions, those with diarrhoea within 3 days prior to the assessment had 9-fold and those with urinary incontinence and pressure ulcers had 4-fold risk for FI; the three of these conditions all well-documented factors with significant association with faecal incontinence.
Our study confirms the finding of Nakanishi et al. (1997)33 that cognitive decline, with or without diagnosis of dementia, and a number of physical limitations are associated with FI. In the current study, those with severe cognitive decline had almost 5-fold risk of FI. In addition, those with severe functional decline had 7-fold risk of FI.
The work load associated with FI was substantial; the mean care time in hours allocated for those with FI was approximately double compared to continent patients. After adjusting for confounders, FI did not appear to be responsible for increased work-load in home-making services and neither were the informal care-givers’ working hours allocated to FI patients greater in numbers in patients with FI compared to those without it. Informal care-giver burden was significantly associated with FI in the presence of all confounders as long as cognitive and physical impairments were tested with the cut point in ‘any impairment present’ yes or no. As soon as both impairments were divided into mild to moderate and severe, the severe impairment both in cognition and in physical functions kicked informal care burden out of the model indicating that severe decline in cognition or physical functions are both stronger reasons for care burden than FI. However, when adjusted for severe impairments, there was greater work-load seen in those professionals responsible for health related services, e.g. home visiting nurses (in highest number of hours) and home health carers (in moderate and in highest number of hours). It is possible that these personnel categories try to relieve the burden of the informal caregivers by adopting some of responsibilities of the old spouses or other relatives. Among those living alone, some of the tasks in other households performed by the informal care givers fall on the shoulders of formal care givers, instead; this might also explain the non-significant association between FI and informal care-giving hours and absence of additional care-giver burden in the presence of FI.
There were substantial differences between countries as to the prevalence of FI. In the samples from Finland, the Netherlands and Sweden, FI was not seen in men. In addition, the prevalence of FI in men was very low in Iceland. In these countries, FI could be the final extra piece in the work-load that leads to institutionalization. The same might apply to the other countries with low prevalence of FI.
One of the limitations of the current study is that—apart from France and Germany—the data mainly were gathered from one site in each of the countries, only. It is impossible to be sure whether the variations reflect differences between sites or entire countries. Retrospective nature is an additional weakness, and the fact that the entire study was not particularly designed for investigating faecal incontinence. Therefore, the power of the sample was not originally calculated for this analysis. Therefore, current data about the patients’ parity or their detailed types of incontinence are missing, use of laxative medications are not available and gastrointestinal diseases might be under diagnosed. Underestimating FI is possible among those living alone and suffering from psychiatric diseases or dementia. In addition, squeamishness or embarrassment might be barriers for delivering information in these issues, in this age cohort.
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Conclusions |
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FI is associated with substantial work-load among the health care staff. Severe impairments in cognition and physical functions, rather than gastrointestinal diseases, seem to be important underlying causes for FI. In order to find out whether FI, in an older home care client, will be the final straw to break the camel's neck and leads to institutionalization, further studies are warranted.
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Acknowledgements |
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The authors wish to acknowledge their co-investigators in The AD-HOC project for collecting the data, European Union for the grant that made the Ad-HOC study possible (QLK6-CT-2000-00002) and inter-RAI for constructing the RAI-HC questionnaire.
Conflicts of interest: None declared.
Key points
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References |
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