Summary

A larger proportion of CFS/ME patients experienced all three types of continuity more positively than negatively. Women in the lowest educational group were more likely to experience informational continuity negatively compared to women with a university education of 1–4 years. Women aged 60 years and over were more likely to experience management continuity positively compared to women aged 40–59 years. Relational continuity was more likely to be negatively experienced by women with severe disease, and more positively experienced by women with longer GP relationships (of 3 years or more).

Comparison with existing literature

More than one in three participants had negative experiences with GPs feedback on investigations (informational continuity). This corresponds to the results of a British study where 40% of CFS patients reported that their test results were not explained by their GP [29]. Our finding that women with lower educational attainment were significantly more likely to experience negative informational continuity of GP care (Table 3) aligns with research showing that lower educated patients experience less information giving from doctors, fewer questions and discussions in consultations, and less decision making involvement compared to highly educated patients [30].

Almost two in three of our participants reported positive experiences of GP management continuity (GPs role as a liaison between health care services). Older women (aged 60+ years) were significantly more positive about management continuity than younger women were. This is consistent with the general finding that older patients are more satisfied with primary health care quality, where continuity is an important hallmark [31–33].

The most positive continuity of care score observed was for relational continuity. Nearly four in five (77.2%) of our participants considered themselves and their GP a well-functioning team. However, those who reported having more severe CFS/ME was significantly more likely to report this dimension of continuity as not met. This is consistent with a number of studies across diagnoses and health care settings, reporting that poorer health is associated with lower quality scores [34–38]. Unsurprisingly, a GP relationship of less than 3 years was associated with less positive relational continuity experiences. The duration of GP relationship might be considered an alternative measure of continuity [18], thus indicating that this association might represent two sides of the same coin.

Strengths and limitations

One of the strengths of this study is that we recruited the participants from a relatively homogenous group (patient organisation). This recruitment strategy enabled patients to describe their experiences without fear of their views negatively affecting their relationships with health care providers. Moreover, we used a well-designed systematically tested questionnaire [24], and the estimated response rate is regarded to be high. This study contributes to fill gaps in our knowledge, since solid documentation of continuity of care experiences among patients with CFS/ME is lacking.

A limitation is that our sample may not be fully representative for women with CFS/ME. Higher functioning patients might not demand patient organisation membership to the same extent as those in poorer health (survivor bias) [39]. On the other hand, the most seriously affected members might not participate due to disease severity. The direction of a possible selection bias from these factors is not obvious. Second, the distribution of e-mail addresses might have been skewed, for instance towards younger members with higher education. However, since 93% of Norwegian households had access to the internet at the time of the study conduct [40] it is unlikely that this has influenced our results significantly. Third, our sample were younger and more highly educated than the Norwegian average [41]. Because younger individuals might not have completed their education, a possible skewness regarding these two variables might balance each other out to a certain extent.

In analysing data from questionnaires, there is always a potential for recall bias, usually leading to underreporting. Validity of self-reported measures might be discussed, particularly measures of disease severity. However, in the case of CFS/ME there are no objective measures for the presence or severity of disease. It is thus difficult to judge whether over-reporting or under-reporting might be present in our data.

Three participants reported that a doctor had not diagnosed them, and one reported that she did not know if a doctor had made her diagnosis. Since these few respondents might be waiting for further investigations as part of the diagnostic process, we do not think their inclusion represents a problem regarding the validity of our study. Besides, due to disagreement about diagnostic criteria and lack of objective tests for this condition, even doctor made diagnoses might be uncertain.

The possibility of unmeasured factors affecting the reported associations cannot be excluded. Further research on continuity of care among patients with CFS/ME might include exploring associations between continuity and other variables such as income and GP gender, and also examination of other facets of information giving, provision of feedback, doctor-patient collaboration, and coordination of healthcare services.

As with all cross-sectional studies, no causal relationships can be established.