Background: Across recent health reform research, there is growing advocacy and awareness surrounding the idea that patients should act as more effective managers of their health and healthcare. Knowledge dissemination is frequently named as a preliminary requirement for this shift in attitude and behaviors. In 2017, the Lymphoma Coalition (LC) conducted a mixed methods investigation to determine if evidence exists pointing to better outcomes for more 'informed' patients. Though outcome measurements and definitions varied throughout the literature, one theme remained consistent: when a patient has knowledge surrounding their condition, they are more inclined to be confident in sustaining an active patient role, they ask more questions and their patient experience is improved. To continue this investigation, the LC utilized the 2018 Global Patient Survey (GPS) on Lymphomas and CLL to further explore patient awareness and understanding, sources and level of information, support from healthcare professionals (HCPs), and the impact this has on the patient experience.
Methods: The 2018 LC GPS was hosted on a third-party portal from January 2018 to March 2018. Patient and caregiver versions were prepared and made available in 19 languages. The survey questions focused on the following: patient information and support, fear of relapse, fatigue, living with side effects, and barriers to care. The survey was advertised through the social media of 65+ lymphoma-related patient organisations, Lymphoma Hub, scientific partners, INTERLYMPH, and HCPs. Overall, 6631 participants took part from all over the world. To perform the analysis, the surveys completed by patients and those completed by caregivers were merged. A minimum completion threshold (0.30) was defined in order to eliminate partially completed surveys. Descriptive statistics were performed for all questions of the survey. Associations between factors were examined through cross-tabulations and chi-square tests (significance level set at p=0.05). All statistical analyses were performed with IBM SPSS v21. The results presented are those specific to the 'patient information and support' sub-investigation.
Results: When asked what level of information they felt they had overall, 34% of respondents globally felt they had received adequate information, 45% somewhat adequate and 21% inadequate information. The impact of perceived information level was reflected in respondent's understanding of the medical aspects of their lymphoma, diagnosis and care. Respondents with adequate information reported a greater understanding of all topics surrounding diagnosis and care (subtype, treatments, side effect management) following their initial visit to the doctor (Table 1, Figures 1 & 2).
Adequately informed respondents were more confident in determining the need for medical care vs. handling a health problem on their own (59%) compared to somewhat (35%) and inadequately (22%) informed respondents. Similar trends were observed across the majority of feeling and understanding categories (Figure 3). Generally, adequately informed respondents reported experiencing low levels of negative feelings (out of control, fearful) 'most days', while inadequately informed respondents reported experiencing low levels of positive feelings (in control, mentally/physically strong) 'most days'.
To analyze doctor-patient communication, somewhat and inadequate information levels were grouped as a comparator against adequate information; across all categories, improved communication was reported by those with adequate information (Figure 4). Additionally, the general reporting of physical, medical, and psycho-social side effects was statistically dependent on the information level variable.
Conclusion: Having a perceived adequate information level was correlated with more self-reported positive healthcare experiences. Patients with adequate information reported bettered management of their health and healthcare through improved understanding, confidence levels, and communication. Therefore, access to credible timely information is an important aspect to a successful patient experience. These results present implications for both patient outcomes (health behaviors, health status) and burdens to the healthcare system.
No relevant conflicts of interest to declare.
Asterisk with author names denotes non-ASH members.