1.4.2.1

Hierarchy of care

Only certain professionals and health or social services were considered to be useful by the 130 MS patients in our study. Apart from access to general or specialised care by a GP, neurologist and physiotherapist, access to medication via a pharmacist, and access to everyday care not necessarily related to MS, such as an ophthalmologist, gynaecologist and dentist, the majority of patients indicated that they had “ no need ” or “ no opinion ” about most of the services or care proposed. Access to a neurologist was the most common one in a Swedish study , 71% of MS patients consulted a neurologist per year, and 92% of the 165 patients in the study consulted one at least once every three years, irrespective of disability level. An Irish study reported that 23% of patients were examined by a neurologist at least once a year and only 13% of patients had never seen a neurologist, which appears to correspond to 64% of patients assessed at least once a year. The literature describes the potential frustration of patients who are obliged to consult a referent doctor, usually the patient’s GP . Patients may feel that they do “not have a future” if the referent doctor considers that their job is no longer important, or that access to a PMR centre it is not useful . Access to PMR was perceived as useful by our MS patients, especially as the disease progresses and functional consequences become more prominent, as reported by Gottberg et al. . Although the EDSS scores of patients were not recorded systematically in our study, it is possible to establish a link with these scores through the duration of the disease. There was a significant difference between the length of illness in patients who sought PMR and those who did not consider that they needed it, the latter having a shorter mean duration of illness. A study by MacLurg et al. in Northern Ireland described two EDSS thresholds (3.5 and 6–6.5), which separated patients into three groups according to mild, moderate or severe disease. These authors have focussed on the criterion of independent walking ability, which appeared to define the illness as severe or not, whereas others consider this definition to be more subjective . Access to a neurologist mainly concerned patients with moderate disease (66% of patients had seen a neurologist during the year); patients with mild disease were managed mainly by their GP (29% had seen a neurologist during the year), whereas management appeared to be more multidisciplinary in patients with severe disease (47% had seen a neurologist during the year). In addition to disease-modifying drugs, which are now generally used as early as possible, a number of factors influence which preventive strategies should be implemented in the initial stages of MS. These include bladder function and renal complications, tiredness and adaptation to stress, sexuality and changes to family life, professional life and desocialisation . Medical treatment is important to the patient, since it aims to stop or at least slow down the progression of the disease and the related deficits and limitations on activity. However, some factors, such as walking, are considered by the patient to be more essential than others such as changes in sexual function. These latter problems can be hidden more easily but nevertheless have an impact on quality of life in a population, which is typically young . A British study carried out by the MS Society in 2003 demonstrated the lack of knowledge and experience with MS in a population of GPs, each of whom followed an average of only four MS patients of their practice, who would probably at different stages of the disease. This reinforces the conclusions about professional practice standards raised at the public hearing held by the HAS in 2008. In addition to this problem of optimising practice standards overall, the individual practice of professionals who prescribe unnecessary investigational tests or rehospitalisations, or inappropriate care, may also lead to a negative effect on the quality of life of MS patients . A number of examples of the risk of detrimental health changes related to poorly adapted access to care have been described in the literature, resulting in psychological effects such as feelings of humiliation if examination tables are not adapted for disability, or physical consequences such as pain, bedsores or respiratory distress. This may lead to failure to attend certain follow-up visits, which may appear unimportant or too complicated for the patient, typically cardiovascular prevention or gynaecological monitoring . Cheng et al. investigated this diversity in preventive care in the USA, notably for breast examination and mammography, between ambulatory women with MS and women who were more severely handicapped, and suggested three possible causes for variation in care between the two groups. These were, firstly, discrimination attributable to preconceptions of the physician, secondly, reticence of women to participate in a potentially uncomfortable and embarrassing examination and, thirdly, lack of provision of access to care to patients with motor handicaps. In our study, nearly 70% of women declared that they had access to a gynaecologist, which was considered “ easy ” in nearly 60% of cases. However this variable was not studied in relation to the level of handicap in terms of illness duration.

The ease of access to dental care in our study may appear surprising. Literature on the subject is scarce, although the question of dental health in France has been addressed during the implementation of health networks. Notably, the public hearing on access to care for handicapped persons highlighted difficulties related to dental care . Two studies carried out conjointly by the Équipe Spécialisée pour une Vie Autonome à Domicile (ESVAD), an organisation promoting independence at home from the Northern French town of Mons-en-Baroeul and the Conseil Départemental de l’Ordre des Chirurgiens Dentistes du Nord (the departmental professional association of dental surgeons) revealed that one handicapped person in three in this Department had never consulted a dental surgeon and that more than 50% of dental surgeries were not accessible to the handicapped (“Handident” online brochure; Network of access to buccodental health for handicapped persons, 1st March 2010). A Brazilian study, presented at ECTRIMS 2009 (poster No. 859, Y.D. Fragoso, H.H. Alves, L.C. Alves, C.M. Andrade, A. Finkelsztejn; Dental care in multiple sclerosis – an overlooked and under-assessed condition) investigated dental care for 21 MS patients, of whom 15 saw a dentist once a year, which could correspond to “ easy ” access, and six at a lower frequency. Nonetheless, compared to healthy controls, this small group of patients had an elevated risk of tooth loss, asymptomatic infection and temporomandibular dysfunction. One particular situation should be noted for MS patients, which relates to the dental assessment that is requested systematically by neurologists to identify any infectious foci before the initiation of certain immunosuppressive treatments, notably cyclophosphamide or mitoxantrone. In this prechemotherapy context, access to dental care is simplified and the dental examination potentially more thorough.

Three levels of care are generally considered relevant to patients with MS . These are firstly primary care, provided by GPs, which involves fewer medical and physical treatments, secondly, monospecialist care, typically provided by a neurologist, which provides a more specific care plan and finally comprehensive multidisciplinary care, which involves a neurologist and at least two non-neurological specialists, whose aim is the development of a more clearly defined preventive aspect of care. With respect to the different types of community care available for MS patients in a British survey, the most commonly sought was physiotherapy and the most accessible was nursing . This is similar to our findings concerning access to paramedical care in the Pays de la Loire. Access to care does not appear to be linked to the level of handicap stricto sensu and Oeseburg et al. reported the lack of a clear link between level of handicap and perceived need for care and quality of life. MacLurg et al. described a link between the level of handicap and demand for physiotherapy or a nurse but not with occupational therapy. Although access to an occupational therapist may seem difficult since this is only possible through a rehabilitation centre or association, in the context of a PMR consultation.

1.4.2.2

Patient information

The hierarchy of care suggests that patients and their entourage suffer from a lack of information. Such a lack of information has been reported previously and relates to services proposed to patients, help and adaptation to handicap, financial advice, as well as to medical research on the disease. More specifically, studies show the need for complementary information on treatments, physical exercise and management of bladder and sexual problems . In our study, access for the latter two complaints appeared to be required later on in the disease, after a mean of ten years for bladder problems, which appear on average six years after the onset of MS. Like sexual problems, these can severely affect the social life of patients and have a detrimental effect on overall quality of life. Urology was the most commonly consulted non-specific speciality in the Swedish MS study of Gottberg et al., and the extent of access was correlated with the EDSS score . The type of information required changes at different stages of the disease , but it is desirable that the information provided covers all of these aspects and that the patient’s social functioning is assessed systematically by competent professionals . According to patients, the quality of information provided by professionals is described as “diverse”, not always clear, and not covered during a single consultation . Different formats of information are possible, which may be chosen according to the type of information required . Patients describe their “luck” in finding someone who is able to address their concerns in an appropriate way . These findings can be compared to our observations concerning the request of patients for rehabilitation, which may be delayed compared to the request of their entourage, with potentially late requests for services such as PMR and a poor understanding of the role of professionals such as occupational therapists or speech therapists in MS. The patients in our study did not appear to need access to a psychologist, which is surprising since psychological management is reputed to be in demand and seems to be expected in MS networks . When the “patient” and “entourage” results are compared, the entourage may request help for the management of cognitive and psychological problems. This may reflect the probability that the impact of cognitive problems may be perceived more directly by the patient’s entourage, who may even request psychological support for themselves. In the framework of handicap, if psychological management is offered tactfully, patients appear receptive to the offer. Psychological support may be integrated within a multidisciplinary medical and paramedical approach aiming to achieve an autonomous life in an adapted environment. This type of psychological intervention can be as useful as isolated psychological support, which may be required to help a patient come to terms with loss of a previous lifestyle . At the same time, access to psychological help is sometimes more important for the entourage who can burden the patient with their own worries and difficulties in living with the handicap. Gottberg et al. reported that there was more demand for psychosocial than psychological care, and it is interesting to note that in his report, he included the social worker with other mental health professionals “few patients with MS had been in contact with psychologists, medical social workers, or psychiatrists”. As in our study, Edmonds et al. also interviewed patients and their “informal helpers” (essentially family), whose help with the patient is not always recognised. The main factor emerging from this study was the problem of continuity and coordination of care, compartmentalised service provision, and repeated changes in contact persons for home care, which may take a long time to organise. The question of organisation of care in the home did not fall within the scope of our study, at least as far as the difficulty of access to professional home help is concerned. Gottberg et al. showed that informal help, usually familial, is involved particularly during EDSS stages 6–6.5, when more systematic use of technical aids for walking are needed, and when independent activity may become more limited. The difficulties of organisation of care for chronic and complex situations (compared to acute and uncomplicated health problems) which is particularly relevant for MS, have been described in the Dutch study of Oeseburg et al. who described the “transmural” model of organisation (between community and hospital) resulting from a prior multidiscipliniary evaluation. The corresponding situation in France could be the multidisciplinary evaluation of the Maisons Départementales des Personnes Handicapées (departmental disabled person’s office; MDPH), which provides the basis for the evaluation of benefits for handicap, of which the patients in our study did not seem to have much knowledge.

Our results concerning access to the MDPH illustrate patients’ lack of information, since the MDPH represents the only healthcare agency responsible for requests for benefit relating to handicap since February 2005. The fact that more than three-quarters of the patients in our study did not indicate that they were concerned is also very surprising and signifies a lack of knowledge of the different types of help available to them (or which they already receive). Specific requests for an evaluation by the MDPH may also come from professionals to which the patient does not always have easy access such as PMR physicians, occupational therapists or social workers. Devailly et al. described this access as a “bottleneck” that converts this only healthcare agency into an “inaccessible agency”, making worse social septations .

1.4.2.3

Geographic divide

Differences in response rates to the questionnaire between the different départements of the region were also noted, with higher responses in the South than the North. This may be related on the one hand to a lower density of professionals and on the other to the proximity of MS reference centres outside the region. This may lead to conflicting-specialised advice, implications for proximity community management of MS and indirectly to functional consequences. With a regional average of one community or hospital neurologist per 36,200 inhabitants, Loire-Atlantique had 41 neurologists for a population of 1,134,266 inhabitants in 2008 (one per 28,000), Maine-et-Loire had 32 neurologists for 732,942 inhabitants (one per 23,000), Vendée had six for 539,664 inhabitants (one per 90,000), Sarthe had seven for 529,851 inhabitants (one per 75,700) and Mayenne had three for 285,338 inhabitants (one per 95,000). The Vendée, which is in the south of the region and appears to have fewer neurologists compared to the regional average, nonetheless provided a relatively high response rate to the questionnaire. This may reflect closer institutional healthcare links with the regional centre than the more northern départements , Sarthe and Mayenne.

Hardiman et al. attributed the high number of patients who had never consulted a neurologist or consulted one less than once a year (13% and 23%, respectively) to the relatively low number of neurologists in Ireland, one per 350,000 inhabitants, or 10 times fewer than in the Pays de la Loire. The question of access to care in relation to an urban or rural environment should also be addressed. Of the 130 questionnaires analysed in this study, 55% came from urban areas and the remainder from rural or semi-rural areas. Specific features of care for MS in rural areas have been described previously, which include less availability of accessible care, more reliance on the family and informal help such as friends or neighbours, lower incomes and a poorer quality of social care for the inhabitants of these areas . Conversely, there was a proportionally lower declared need for care. However, there is little evidence in the published literature for a clear difference in the number of consultations actually carried out and satisfaction with access to care between patients living in rural and urban areas, while such a difference may exist in satisfaction with care provision between semi-rural and urban areas . Schwartz et al. described that access to care in a more rural population was predominantly “primary” whereas “comprehensive” care concerned a much younger and more educated population but with a lower income and less frequent professional activity outside the home. The Canadian study of Warren et al. showed that the number of GP consultations was lower in large towns where 40% of MS patients had 3–4 visits per year compared to 50–66% of patients in less densely inhabited areas. This same study failed to show a difference in number of visits to a neurologist, which was on average between three and four times a year for less than 25% of patients in all areas. It is difficult in our study to attribute the lack of responses from the north of the region to “urban vs. rural” differences, and the two other possible explanations cited at the beginning of the paragraph appear more likely. It should be noted that this north-south difference concerns the response rate and not a difference in satisfaction with access to the different types of care proposed.