Introduction

The consideration of consumer views on health care and the empowering of patients are especially important for the improvement of long-term therapeutic outcomes in chronic illness. Multiple Sclerosis (MS) is a chronic and disabling disease which profoundly affects the quality of life of the person from the moment of diagnosis until the end of their life. Almost 500,000 people across the EU are directly affected, but this disease indirectly affects many more people who are close to patients. The Code of Good Practice in MS provides a practical framework that describes in general terms: the optimal approach in relation to treatments, therapies and services, research, employment, and empowerment of people affected by MS [1].

Assessing of consumers views on health care has only developed over the last decade. A range of methods are available including short questionnaires or open interviews to assess patients’ needs, preferences and evaluations before or after a consultation with the clinician, focus groups to include patients’ views on the clinical guidelines, and surveys to provide patient feedback to care providers [2]. The Italian MS Society (AISM) has promoted the monitoring of MS Center’s quality of service by evaluating seven principal spheres (access, environment, functioning, team, relationship, information, services) in relation to functioning for four groups of patients with different grades of disability and types of disease (newly diagnosed, mildly disabled, moderately disabled and severely disabled) [3]. In order to assess patient satisfaction with offered care service and to evaluate their adherence to therapy, we created a standardized interview considering the care quality parameters defined by AISM to propose to group of our MS patients with a mild or moderate disability.

Materials and methods

A standardized interview with a standard of multiple-choice answers to questions (close-ended), scored (from 0 to 5) or open-ended questions was structured in three parts: (1) patients’ demographic, social and clinical characteristics including perceived utility of treatment and patients’ adherence to therapy; (2) evaluation of patients’ quality of life; (3) evaluation of patients’ care service received, their preferences and involvement in the care provided (Fig. 1). We defined the beliefs about what people want from offered services as “attention”, and beliefs about what actually happened as “judgment”. Patient satisfaction was evaluated by the concordance between these parameters.

Fig. 1
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Interview on quality of care

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The inclusion criteria consisted of those aged over 18, who were able to speak Italian, had mild or moderate disability (walking without any aids) included new diagnosed and had had at least two clinical visits in the last 6 months by the same physician at our Centre. The inclusion criteria were verified by care provider which signaled these patients after their medical visit to external neurologist who was staying in the clinic but did not know any of the consumers at the Centre. The external neurologist invited these patients to interview administrating in different room of Institute and in anonymous form for all operators. Participants were not compensated. At the end of study, the different physicians tabulated the data of surveys and the statistician analyzed these data. The open-ended questions were not statistically analyzed but only evaluated as suggestions to clinicians.

Statistical analysis

Descriptive statistics were used to summarize pertinent study information. All items (range score between 0 and 5) was divided into two groups: group 1 (score 5) and group 2 (score 0–4). Adherence to therapy was dichotomized into very good (all administration done or therapy interrupted only due to the decision of the physician) and others. The association between variables was tested by the Pearson Chi-square test or the Fisher’s exact test. The concordance between the grade of patient attention and judgment was achieved using the kappa index indicating that values under 0.20 mean poor concordance, 0.20–0.40 weak concordance, 0.41–0.60 a moderate concordance, 0.61–0.80 good concordance and over 0.80–1 very good concordance. All correlation analyses were done with the Pearson or Spearman’s Rho tests. Student’s t test was used to compare mean values. The logistic regression multivariate analysis was used to assess the impact of the following variables on the adherence to therapy: sex, age, duration of disease, duration of treatment and the scoring in all spheres related to quality of life, judgment for all parameters related to quality of care, emotion felt during their stay in hospital, patients preference for their clinical management and of their involvement in the care provided. The multivariate logistic regression model was developed using stepwise regression (forward selection) with predictive variables that were considered significant in the univariate analyses. The cutoff p value to enter in or to be removed from the model was set between 0.10 and 0.15. The SPSS (18.0) statistical program will be used for all analyses.

This study was approved by the Ethical Committee at the Regina Elena Institute. The questionnaire has not been validated and used in other studies.

Results

Ninety-seven MS patients agreed to participate in this study. Some patients did not want to participate to the study, stating they had no time after the visit, the data of these patients are not available. The participants were Italian people (32 men and 65 women) with mean age (±SD) of 38 years (±10.8), mean time since the diagnosis of 7.6 years (±6.2) and mean treatment duration of 4.2 years (±3.0). The 94% of patients were employed including the students. The 11% have living alone, 39% with parents/brothers and 49% with partner/children; 51% were unmarried, 43 and 6% were, respectively, married and separated. The majority of patients related having a good overall quality of life, personal well-being and satisfaction for interpersonal relationships and social activities (for all: median 4, range 0–5) with minor satisfaction for physical energy (median 3, range 0–5) and cognitive performance (median 2, range 0–5). More patients considered our health care service as very satisfactory (median 5, range 2–5). The concordance between patient attention and judgment on health care services resulted statistically significant for all parameters (waiting time, clarity of information, comfort of environment, possibility of choosing the physician, kind treatment and experience of medical staff, presence of other specialists in the same structure) except for the possibility to choice the time of their medical visit, duration of waiting list and availability of physician (Table 1). The internal functioning of the hospital organization and relationships with the medical staff provided to patients showed predominantly positive feelings: well-being, safety, tranquillity, expectation and reliability (for all: median 4, range 0–5). The majority of patients preferred to be informed (median 5, range 0–5) and involved (median 5, range 2–5), in particular, in general clinical decision making, in choosing their therapy and in selecting a timetable of medical visits (for all: median 5, range 0–5). They preferred to have experienced medical staff (median 5, range 0–5) more than to have a young medical staff more motivated and dynamic (median 3, range 0–5) or to trust in any staff (median 4, range 0–5) but other to put yourself in the hand of physician (median 5, range 0–5). The patients liked to have the availability of a medical contact for 24 h all days (median 4, range 0–5) and only some persons needed to confirm in other hospitals about the diagnostic and treatment choices (median 0, range 0–5). Twenty-six percent had specified some inconvenience in regards to the organization of care, in particular, the length of time in waiting for their medical visit (6.2%), had to return because of logistic problems (13.4%), having to ask for directions for finding their way into the hospital (4.1%), without receiving any explanations (2.1%). Thirty percent of patients suggested improving the organization of the health care service: to improve of disabled movement into the hospital (7.2%), to facilitate a payment of tickets and a major phone accessibility (5.1% for each), to increase the days assigned for visits and the MS-dedicated nurses (3.1% for each), to have a home assistance (2.1%) and others (4% in all).

Table 1 Parameters of quality of care: concordance between grade of patient attention and judgment on offered service
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A high percentage of patients (95%) were treated with disease-modifying therapy of which 51% self-administered. Adherence to therapy was very good (all administration done or therapy interrupted only due to the decision of the physician) in 71.7% of patients, quite good (some administration not done) in 21.7% of patients and bad (voluntary suspension for at least 1 month) in 6.5% of patients. The overall perceived utility of treatment was high (median 5, range 0–5) despite frequent side effects (88%). The perceived utility of treatment was significantly correlated (p < 0.05) to patients feeling tranquil and confident in the hospital and medical staff, to their perception of being involved in the therapeutic decision, in scheduling the time of medical visits and in their satisfaction for the variety of modern specializations available at the hospital. We divided the patients in two groups regarding their level of adherence to therapy: very good (n = 66, 71.7%) and other (n = 26, 28.3%). We analyzed the association between these two groups and all the parameters dividing into two groups, group 1 (score 5) and group 2 (score 0–4) that may influence the adherence to therapy. We found a significant association between adherence to therapy and perceived utility of therapy (96.1 versus 41.5, p = 0.0001), possibility of choosing the physician (75.6 vs. 50.0, p = 0.05) and treatment duration which resulted lower in patients with higher adherence to therapy (3.8 vs. 6.1, p = 0.0001) (Table 2). At multivariate analysis the adherence to therapy was associated to the possibility of choosing the physician (OR = 3.87, CI 95% 1.08–13.88, p = 0.037) and to therapy duration (OR = 0.71, CI 95% 0.58–0.86, p = 0.001) when the perceived utility of treatment was excluded from this analysis because of the expected strong relationship with the adherence to therapy.

Table 2 More significant association between adherence to therapy (2 groups: very good or other) and parameters which could influence this adherence (2 groups: score 5 or score 0–4)
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Discussion

The measurement of general health status is important because it indicates which interventions really make a difference to a patient’s overall quality of life and helps to quantify the relative effects of these interventions for different classes of patients. Physiological measures provide information to clinicians but often correlate poorly with the actual functional capacity and well being which are most important to patients. Moreover, the self-report HQOL indices are strongly influenced by measures of depression [4–7].

We wanted to examine the patient’s satisfaction with offered care services, patient’s well being and perceived utility of treatment and second, to evaluate the patient adherence to long-term disease-modifying therapy in chronic diseases such as MS. We selected only walking MS patients who underwent more visits in specialized MS Centers in order to undertake also disease-modifying treatments, for this reason more susceptible to long-term out-patient specialized intervention. We excluded advanced MS patients with severe disabilities from our study, because of the reduced clinical access, difficulty in transportation and frequent cognitive impairment. Indeed the assessment of general health status in patients with cognitive impairment and communication problems is difficult, so outcome assessment in this group focused on the assessment of levels of impairment and disability, rather than on general health status or general well being. For the evaluation of care services, we estimated the seven principal spheres (access, environment, functioning, team, relationship, information, services) based on the indications of the AISM for the monitoring of MS Center’s quality of service. We decided to use a structured interview (also known as a standardized interview or a researcher-administered survey), instead of using the frequently utilized self-administered questionnaires because of its better quality for a relatively small patient population at our Centre. Structured interviews can be used as both quantitative and qualitative research methodologies and the rate of return and the quality of data obtained exceeds that of self-administered questionnaires [8, 9]. The interviewer can clarify the handling of difficult questions and must ensure that each question is understood in the same way by all respondents in order to avoid false data due to misunderstood questions. The interviewer must be able to act also as a coder and the answers must be written down in a standardized form. These types of interviews are best suited to compare participant responses in order to answer a research question and interview schedules are sometimes considered a mean by which researchers can increase the reliability and credibility of research data [9]. Our interview was administered anonymously and by an external medical interviewer who does not know any of the clinic’s consumers, thus avoiding any feeling of intimidation that the respondents might feel and therefore able to give more critical answers. Still our survey has not been tested for reliability/validity, so a comparison with other studies is not well founded.

Previous studies reported several dissatisfactions among MS patients regarding the care provided including: poor management of the diagnosis; variations in the availability, accessibility and quality of care; low levels of psychological support; a lack of information; poor co-ordination between services [10–13]. Socio-environmental support with assistive devices, transportation service for the disabled, psychosocial support/counseling, rehabilitation and non-professional care were more frequently recognized by advanced disease MS patients while information was identified as a stronger need in lower disease impact groups [14–16]. However, discontent of care service is more frequently reported in more disabled patients.

In our study, we evaluated only a group of mild-compromised patients and have found a good level of patients’ well being and overall satisfaction in regards to care as evaluated by the concordance between the level of patient attention and judgment regarding the offered services. The perceived utility of treatment was significantly correlated to patients feeling tranquil and confident in the hospital and medical staff and to their perception of being involved in the therapeutic decision. Moreover, there was a significant association between adherence to therapy and perceived utility of therapy, and treatment duration which resulted lower in patients with higher adherence to therapy. These data appear right and make common sense. Between other parameters, only one was significantly correlated to adherence to therapy: the possibility of choosing the physician. The results of our study highlight the patient’s need in receiving more disease-related information and to having closer relationship with their physicians. More research is needed to confirm these preliminary findings in larger populations to validate this survey in other studies with chronic disease patients. However, these data are similar to other studies that considered the MS patients with a low-grade disability [14–16]. We noted in the Sweden studies that the discrepancy between perceived need and satisfaction regarding disease-related information, engagement/sympathy from staff, kind treatment and accessibility was negative for physicians and positive/neutral for nurses on inclusion time [15, 16]. This discrepancy was negative also for continuity, i.e., meeting the same staff. The same needs were not further evaluated during the continuation of these studies. These data included the high level of expectation that the patients put on medical staff, where patients were more satisfied with having the same reliable physician. The other study demonstrated that the general practices have become larger in most developed countries in the recent years, but patients seemed to prefer general practice organizations with fewer health professionals [17]. Besides, more studies have discovered the association between patients’ perceptions of their relationship with physicians and patients’ satisfaction with the treatment. The relationship is defined in terms of the working alliance which encompasses both cognitive and emotional factors emphasizing physician–patient agreement on the goals and tasks of treatment, and the development of trust and liking between them [18, 19].

Conclusion

The working alliance is important in medical treatment, as it appears to be strongly associated with patients’ therapy adherence. Medical care providers may be able to use psychological and interpersonal dimensions to target and improve health care outcomes. By increasing the role of patients, health care providers should become more responsive to patients’ needs and preferences and deliver better quality care. Patients’ involvement in the improvement of health care can lead to the best long-term treatment outcomes.