Results
Population
The questionnaire was administered at the MS Centre of the University of Cagliari, between October 2010 and July 2011, to 497 MS patients and 206 caregivers. Approximately 200 patients and 100 caregivers did not participate in the study; the principal reason was refusal to participate because of personal organizational problems. Demographic and clinical characteristics were not significantly different between those patients who participated and those who did not. We cannot rule out the possibility that participants attending the clinic may have different needs from those who do not attend, but the aim of the study was to explore different aspects of the global care perceived by patients and caregivers attending the clinic, with the final objective being to support their needs.
The clinical and demographic characteristics of the patient population are summarized in Table 1.
The group of caregivers (206) consists of 35% (72) partners, 28% (58) parents, 17% (35) brothers/sisters, 10% (21) sons, 5% (10) other relatives, 3% (6) professional caregivers and 2% (4) friends; 62% (127) were female and 38% (79) male. There was no difference in caregiver presence on the basis of neurological disability of patients.
Questionnaire Results
Diagnosis and Conduct of Medical Staff. Approximately 90% of patients were diagnosed at our Center. We noted that the level of satisfaction regarding diagnosis was high and nearly the same for patients and caregivers. The majority of patients (67%) and caregivers (68%) were completely satisfied. A quarter considered this moment to be lacking in some respects (patients 24%, caregivers 23%) and a minority (patients 9%, caregivers 9%) found it unsatisfactory. As for medical staff conduct, both patients and caregivers considered it kind (patients 64%, caregivers 58%) and attentive (patients 30%, caregivers 34%) (Table 2).
Source of Information. Despite overall satisfaction with how they were diagnosed, the majority of patients (76%) and caregivers (78%) sought more information about the disease, mainly by consulting the Internet (patients 54%, caregivers 53%), media (patients 17%, caregivers 17%) or their personal neurologist (patients 23%, caregivers 25%).
Both patients and caregivers judged the information provided by the doctor about available therapies for MS (patients 79%, caregivers 60%) and therapeutic choices (patients 83%, caregivers 69%) to be exhaustive; a significantly higher degree of patients (p = 0.001) found this to be the case. Patients (53%) and caregivers (52%) were equally satisfied with the information provided by the neurologist about future therapy options (Table 3).
Participation in the Choice of Medical and Rehabilitation Treatment. More than half of patients and caregivers expressed trust in the therapy (patients 66%, caregivers 55%). It is interesting to note that the majority of caregivers (80%) believed patients were fully involved in therapeutic choices, which was not the case for patients. In fact, about half of the patients (44%) (p = 0.001) believed they were not completely invited to participate in choosing a therapy (Table 4).
Multidisciplinary Approach to MS. The second part of the questionnaire focused on consulting other specialists (particularly physiatrists, psychiatrists and urologists). Patients (30%) reported a desire for a multidisciplinary approach (seeing more than one MS specialist), a significantly higher percentage than for caregivers (0) (p = 0.001) (Table 5).
Social Impact of the Disease. The last section of the questionnaire, which focused on the disease's impact (modification over time) on patients' personal relationships and social interactions, was designed in four parts and based on the different kinds of relationship: with relatives, friends, partners and work colleagues. Patients and caregivers did not significantly differ in their opinions of relationships with friends (patients 74%, caregivers 62%) and family (patients 64%; caregivers 57%), which they generally report to be unchanged. They did have a different perception of the effect on relationships with partners, however; the majority of patients considered it to be unchanged (59%), compared with 42% of caregivers (p = 0.001). However, patients (50%) reported a negative effect on their relationships with work colleagues more frequently than caregivers did (43%) (p = 0.001) (Table 6).
Psychological Support. The questionnaire distinguished the need for psychological support at diagnosis and later, over the course of the disease. At diagnosis, both patients (70%) and caregivers (85%) affirmed in equal measure the patients' need for psychological support, especially from family (patients 21%, caregivers 22%). After diagnosis, however, patients (65%) and caregivers (45%) disagreed about the need for psychological support. Patients (19%) considered familial support less necessary than caregivers (49%) did (p = 0.001) (Table 7).