This study shows that most of those who have attended a four-week specialised rehabilitation programme at the Multiple Sclerosis Center Hakadal are satisfied with their stay and believe that it will have a positive effect on their general quality of life, their physical and mental health, their ability to cope with daily tasks and their participation in social activities.
Increasing importance is ascribed to so-called patient-centred outcomes as a quality indicator in the health services (9), including in treatment of MS (10). Patient satisfaction depends on the patient’s expectations, processes in the encounter between the patient and the therapist, structural and organisational aspects of the health institution, as well as the patient’s perception of treatment outcome. It has been claimed that patients most often have no qualifications for assessing the professional standard of diagnostics and treatment, and will therefore tend to emphasise their perception of care, participation, premises and food (11). It has also been pointed out that high patient satisfaction not necessarily reflects high professional standards, for example because patients may have unreasonable demands, the compliance with which could be more or less wrong or even harmful (12). Unfortunately, we have no knowledge as to whether patient satisfaction is correlated with other measures of treatment effectiveness, such as physical function, need for assistance or employment after discharge. Neither can we tell how long the level of satisfaction upon discharge tends to endure. An exclusive focus on patient satisfaction after the end of the stay may thus be a poor guideline for setting priorities in the health services (13).
On the other hand, it is far from obvious that outcomes defined by the therapist will provide a more truthful or relevant impression of the quality of rehabilitation programmes for chronic and serious diseases such as multiple sclerosis, for which more objective measures such as employment and independence from the health and care services tend to be utopian. It is also worth noting that an improvement in the ability to function physically, which can be quantified fairly easily with the aid of objective tests, is not necessarily correlated with health-related quality of life (7). Patient satisfaction therefore represents a value in itself, independent of outcomes defined by the therapist.
The majority of the patients at the Multiple Sclerosis Center Hakadal are relatively familiar with the centre before arrival, for example through previous admissions. This may give rise to a selection of patients who are satisfied with the forms of treatment provided, so that a high level of patient satisfaction may appear to be a self-fulfilling prophecy. It is therefore important to identify the needs and expectations of rehabilitation also among patients who do not apply for existing rehabilitation programmes.
Even though cognitive symptoms occur frequently in patients suffering from multiple sclerosis, we have little knowledge of what interventions are the most appropriate (14, 15). The Multiple Sclerosis Center Hakadal has developed a model for cognitive rehabilitation, and some of the participants presented in this article also participated in a prospective evaluation of this model. The model comprises a neuropsychological examination and weekly individual consultations with the neuropsychologist and the occupational therapist, as well as group-based training, practical exercises and sharing of experiences. The participants receive advice on how to establish goals for coping with cognitive challenges in daily situations, and after discharge they are followed up with telephone conversations focusing on goal achievement. Only one-third of the patients in our study reported having had contact with a psychologist or a neuropsychologist. This is partly a reflection of the fact that there is limited availability of these professions, which is backed up by feedback from some patients who were dissatisfied with not having been granted cognitive rehabilitation as desired. Neither did all the patients report having been in contact with a doctor or a physiotherapist, even though all patients have individual consultations with these professionals. It is possible that this reflects dissatisfaction with the contact with these professionals on the part of some patients. However, this assumption is not supported by corresponding free-text comments provided by those who reported not having seen a doctor or a physiotherapist.
The strengths of this study rest in its high participation rate and a high response rate for each question, as well as its use of a validated questionnaire. We may therefore assume that the results are representative of the patients who were admitted to the Multiple Sclerosis Center Hakadal during the period of study. On the other hand, the study also has some limitations. Many of the questions were of such a general nature that they are not very suitable for identifying aspects of the rehabilitation programme that possibly ought to be amended. Since all but a few of the patients were satisfied with their stay, we have too little variance in the material to conduct a statistical analysis in order to detect correlations between the responses to the various questions. Moreover, we have no longitudinal data that could allow for investigation of whether changes to procedures have had an effect on patient satisfaction. A further limitation is that factors such as age, gender and degree of disability in individual respondents were not identified, and we can therefore draw no conclusions as to whether the programme should be adjusted with regard to certain groups of patients (16). However, this is likely to be less important, since the vast majority of the patients were satisfied. Neither have we investigated other outcomes, and can therefore not conclude whether patient satisfaction is correlated to better ability to function, health-related quality of life or other relevant measures for the effect of the rehabilitation programme.