Abstract
Background
Lymphomas can occur in all age groups but most commonly occur in older adults. Despite the shift towards patient- centered care, very little has been done to explore the information needs of patients with lymphoma by age.
It is important for information to accessible to patients of all ages, as informed patients are consistently associated with better outcomes and healthcare experiences. In this study, Lymphoma Coalition (LC) describes the age-related differences in the information needs of patients with lymphoma using the 2020 LC Global Patient Survey (GPS).
The objectives of this study were to identify: 1) how patients felt about the amount of information they received at diagnosis 2) the content of the information received at diagnosis and the level of understanding, and 3) their informational needs.
Methods
Globally, 11,878 respondents including 9,179 patients and 2,699 caregivers took part in the 2020 LC GPS. There were 9,078 patients included in this analysis who self-identified their age. These patients were grouped into five age groups for analysis: 18-29 (n=638), 30-39 (n=1,196), 40-59 (n=3,261), 60-69 (n=2,216), and 70+ (n=1,767).
Demographics of the five age groups were examined, and descriptive analyses for all questions relating to information needs were performed in IBM SPSS v27.
Results
The five age groups differed significantly (p< 0.001) in all the demographic categories examined. These categories included lymphoma subtype, sex, area of residence, education level, employment status, and household status.
Patients were asked how they felt about the amount of information given to them at diagnosis. The oldest age group (70+) reported the highest prevalence (70%) of having received the right amount of information (Table 1). The younger age groups (18-29; 30-39; and 40-59) reported the highest prevalence of not receiving enough information (38%, 42%, and 41% respectively). Although not many patients reported being given too much information, of those who did, the younger age groups (18-29; 30-39; and 40-59) were the most prevalent (10%; 7%; and 5% respectively) (Table 1).
Patients were asked about the type of information given to them at diagnosis, and how well they understood it. Compared to the younger age groups, the older age groups (60-69 and 70+) more frequently reported that they received and understood information given to them on different medical treatment options, the process and stages of their care, and how to manage side effects of treatment (Table 1).
Patients were also asked what they needed more information about (Table 1). The top three areas that all patients needed more information about (regardless of age group) were treatment options, side effects from treatment, and their diagnosis and what it means. There was significant difference in the prevalence of how these information needs were reported between the age groups (Table 1).
There was also significant difference in the prevalence of reporting a need for more information on support for self care, psychological support/counselling, and fertility across the age categories (Table 1). The lowest prevalence for needing more information in any of these areas was observed in the older age groups (60-69 and 70+), while the highest prevalence was observed in the youngest age groups (18-29 and 30-39) (Table 1). Although few patients reported not needing more information in any of these areas, its reporting was most prevalent in the older age groups (60-69 and 70+) (12% and 19%, respectively) (Table 1).
Summary/Conclusions
This analysis revealed that patients with lymphoma/CLL experience medical information differently across age groups. Compared to the mid and oldest patient groups, younger patients with lymphoma or CLL reported experiencing medical information differently than older patients do and reported less understanding of the medical information given to them. The younger patients also reported higher informational needs about their disease and treatment that may also be related to their age (e.g. information on fertility and family support).
Clinicians should note these differences in age-group experiences and information needs, with the understanding that younger patients with lymphoma or CLL may require additional information, attention, and support. In the future, LC would like to explore how demographic differences may have confounded results.
No relevant conflicts of interest to declare.
