The Patient Experience of Acute Lymphoblastic Leukemia and Its Treatment: Social Media Review

Background Adult patients with acute lymphoblastic leukemia (ALL) report substantial disease- and treatment-related impacts on their health-related quality of life (HRQOL). Patient-reported information (PRI) shared on social media may provide a distinct opportunity to understand the patient experience outside of formal research contexts and help inform the development of novel therapies. Objective This qualitative social media review aimed to assess PRI shared on social media websites to gain a better understanding of the symptom, HRQOL, and treatment impacts on individuals with ALL. Methods We identified English-language posts on 3 patient advocacy websites (Patient Power, The Patient Story, and Leukaemia Care) and YouTube that included PRI about experiences with ALL or ALL treatments shared by adults (aged ≥18 years) with a self-reported ALL diagnosis. Patients’ demographic and disease characteristics were extracted from posts (where available), and the posts were analyzed thematically. A network analysis was conducted to delineate possible associations among ALL symptoms, HRQOL impacts, and treatment-related symptoms and impacts. Results Of the 935 social media posts identified, 63 (7%) met the review criteria, including 40 (63%) videos, 5 (8%) comments posted in response to videos, and 18 (29%) blog posts. The 63 posts were contributed by 41 patients comprised of 21 (51%) males, 18 females (44%), and 2 (5%) whose gender was not reported. Among the patients, 13 (32%) contributed >1 source of data. Fatigue (n=20, 49%), shortness of breath (n=13, 32%), and bruising (n=12, 29%) were the symptoms prior to treatment most frequently discussed by patients. Patients also reported impacts on personal relationships (n=26, 63%), psychological and emotional well-being (n=25, 61%), and work (n=16, 39%). Although inpatient treatment reportedly restricted patients’ independence and social functioning, it also provided a few patients with a sense of safety. Patients frequently relied on their doctors to drive their treatment decisions but were also influenced by family members. The network analysis indicated that disease-related symptoms were primarily associated with patients’ physical functioning, activities of daily living, and ability to work, while treatment-related symptoms were primarily associated with emotional well-being. Conclusions This social media review explored PRI through a thematic analysis of patient-contributed content on patient advocacy websites and YouTube to identify and contextualize emergent themes in patient experiences with ALL and its treatments. To our knowledge, this is the first study to leverage this novel tool to generate new insights into patients’ experiences with ALL. Patients’ social media posts suggest that inpatient care for ALL is associated with restricted independence and social functioning. However, inpatient care also provided a sense of safety for some patients. Studies such as this one that capture patients’ experiences in their own words are valuable tools to further our knowledge of patient outcomes with ALL.

• Social media can be used for understanding the experiences of people living with acute lymphoblastic leukemia (ALL for short) who choose to share their thoughts online.
• Symptoms of ALL and side effects of treatment appear to affect different aspects of people's day-to-day lives.
-A side effect is something (expected or unexpected) that you feel was caused by a medicine or treatment you take.
-Symptoms of ALL appear to affect people's physical functioning the most, including activities of daily living and their ability to work.
-Side effects of treatment appear to affect people's mental health the most.

Date of summary: May 2023
The full title of this article: The patient experience of acute lymphoblastic leukemia and its treatment: social media review Please note that this summary only contains information from the full scientific article: Understanding the experiences of people with acute lymphoblastic leukemia using social media

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Additional information
More information can be found in the scientific article of this study, which you can access here:

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What did this study look at?
• ALL is a type of blood cancer.
-For people with ALL, the body makes too many lymphoblasts.These are a type of white blood cell, released from bone marrow before they have fully developed.
All the blood cells in the body develop from stem cells produced by bone marrow.This is a spongy material found inside bones.
-As the number of lymphoblasts increases, the number of red blood cells (which carry oxygen around the body) and platelets (which help stop bleeding) decreases.
This can cause tiredness, shortness of breath, and an increased chance of bleeding.
-Lymphoblasts are also less effective than fully developed white blood cells at fighting bacteria and viruses, which makes people more vulnerable to infection.
• ALL and its treatment continue to negatively affect people's day-to-day lives.
• Understanding the impact of ALL and its treatment on people's lives will help researchers to develop treatments that meet people's needs.
• In this study, researchers looked at social media posts in English on publicly available websites.This is known as patient-reported information.
Researchers wanted to understand what people were saying online about: -Their experiences of living with ALL.
-Their experiences of treatment.
-How ALL and its treatment affected their day-to-day lives.
How was this study done?• The 63 posts were from 41 people with a self-reported diagnosis of ALL.
-They were age 18 years or older.
• Based on available information in their profiles: -19 people were from the United States.
-15 people were from the United Kingdom.
-1 person was from Australia.
-1 person was from Canada.
-1 person was from South Africa.
-4 people's location could not be identified.
What were the results of this study?
Experience of ALL symptoms • People described the most common symptoms before treatment.

Additional information
More information can be found in the scientific article of this study, which you can access here: View Scientific Article Experience of treatment • Nearly half of the people (20 out of 41; 49%) had received 2 or more types of treatment.
Bone marrow transplant is a procedure where people receive healthy stem cells to replace their own stem cells destroyed by high doses of chemotherapy or radiation.
• People described the most common treatment side effects.
• People said that these side effects often lasted for a long time.
• Treatment side effects affected people's day-to-day activities, such as using their hands, showering, and eating.
-One person was concerned that treatment side effects would affect their ability to have children in the future.
• Treatment side effects negatively affected people's mental health.
-One person felt that treatment for ALL was worse than the condition itself.
• 3 key themes emerged from the analysis of social media posts related to the experience of treatment: -Treatment in hospital.
-Treatment expectations and wishes.
-Making treatment decisions.Links between symptoms and side effects on people's day-to-day lives • Researchers looked at possible links between symptoms and side effects of treatment on people's day-to-day lives.
• The symptoms of ALL appeared to have the most impact on people's physical functioning, daily activities, and ability to work.
• The side effects of treatment appeared to have more of an impact on people's mental health than their physical functioning.
• Some side effects of treatment were associated with changes in eating habits linked to weight loss.These included: -Low levels of neutrophils, which are a type of white blood cell.
-Changes in taste.
• 3 people thought these side effects were due to chemotherapy.
• 1 person thought these side effects were linked to a stem cell transplant.
• Physical limitations appeared to have a negative influence on people's day-to-day lives, impacting their daily activities, work, travel, mental health, and relationships.Out of 41 people: 9 people described how they made treatment decisions 7 people said they relied on their doctors to help them make treatment decisions 3 people said that their treatment decisions were influenced by parents Some people said that the shock of their diagnosis meant they were unaware of treatment options, and they did not necessarily take everything in 7% 22% 17% Symptoms had an impact on people's physical functioning: 5 people said they had trouble climbing stairs or walking uphill 4 people said they had trouble getting out of bed 3 people said they had trouble walking short distances feeling tired and lacking energy 13 people reported shortness of breath• People described the impact of ALL symptoms on day-to-day lives.that ALL symptoms affected their ability to work 11 people said that ALL symptoms affected their ability to do daily tasks, such as self-care, shopping, and leisure activities 2 people also said that symptoms affected their social lives 5% 39% 27%