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The patient experience of multiple myeloma (MM) is multifaceted and varies substantially between individuals. Current published information on the patient perspective and treatment of MM is limited, making it difficult to gain insights into patient needs regarding the condition.
In this review, a combined research method approach (ie, the review of published literature and social media posts) was undertaken to provide insight into patients’ perspectives on the burden and treatment of MM, the impact of the COVID-19 pandemic, and the impact of MM on caregivers of patients with MM.
Targeted searches of PubMed and PsycINFO were conducted from November 16, 2010, to November 16, 2020; in parallel, patient-reported information derived from social media posts from 6 patient advocacy websites and YouTube were searched. The review of patient advocacy websites and YouTube targeted patient-reported information from patients with a self-reported diagnosis of MM who discussed their experience of MM and its treatments.
A total of 27 articles and 138 posts were included (patient-reported information included data from 76 individuals), and results from both sources showed that patients experienced a variety of symptoms and treatment side effects, including neuropathy, fatigue, nausea, and back pain. These can affect areas of health-related quality of life (HRQOL), including physical functioning; emotional, psychological, and social well-being; the ability to work; and relationships. Patients valued involvement in treatment decision-making, and both the patient-reported information and the literature indicated that efficacy and tolerability strongly influence treatment decision-making. For patients, caregivers, and physicians, the preference for treatments was strongest when associated with increased survival. Caregivers can struggle to balance care responsibilities and jobs, and their HRQOL is affected in several areas, including emotional-, role-, social-, and work-related aspects of life. The COVID-19 pandemic has challenged patients’ ability to manage MM because of limited hospital access and restrictions that negatively affected their lives, psychological well-being, and HRQOL. Unmet patient needs identified in the literature and patient-reported information were for more productive appointments with health care professionals, better-tolerated therapies, and more support for themselves and their caregivers.
The combination of published literature and patient-reported information provides valuable and rich details on patient experiences and perceptions of MM and its treatment. The data highlighted that patients’ HRQOL is impeded not only by the disease but also by treatment-related side effects. Patients in the literature and patient-reported information showed a strong preference for treatments that prolong life, and patients appeared to value participation in treatment decisions. However, there remain unmet needs and areas for further research, including treatment, caregiver burden, and how to conduct appointments with health care professionals. This may help improve the understanding of the journey of patients with MM.
Multiple Myeloma (MM) is the second most common cancer that affects blood cells. In this study, researchers wanted to know patients’ views on the effects of MM and the treatments they received. Researchers also looked at the impact of the COVID-19 pandemic on patients’ treatment and the impact of MM on caregivers. To this end, the researchers reviewed information from 27 published studies and 138 social media posts by 76 patients with MM. Patients commonly reported nerve pain, tiredness, feeling sick, and back pain caused by MM and the treatments they received. The effects of MM and treatments affected patients’ physical function; emotional, psychological, and social well-being; ability to work; and relationships. The researchers found that patients wanted to be involved in decisions related to their treatment. The effectiveness against MM and known negative effects strongly influenced the choice of treatments for patients. Increased survival was the strongest factor in the choice of treatment for patients, caregivers, and doctors. Researchers found that the emotional-, role-, social-, and work-related aspects of caregivers’ lives were affected by caring for patients with MM. The COVID-19 pandemic also affected the ability of patients to manage their MM because of limited hospital access and the effects of restrictions that impacted their lives and psychological well-being. Finally, the researchers identified some areas requiring improvement, including unproductive appointments with health care professionals, the need for treatments with fewer negative effects, and more support for patients with MM and their caregivers. This information may be useful to improve and understand the experience of patients with MM.
Multiple myeloma (MM) is an incurable systemic hematologic malignancy typically characterized by the neoplastic proliferation of plasma cells and the production of monoclonal immunoglobulins from these cells [
Bone destruction, marrow failure, and complex organ dysfunction are some of the consequences of the characteristic neoplastic proliferation of tumor cells in MM, which can lead to a range of symptoms that are amplified and accelerated during relapses, placing a substantial symptom burden on health-related quality of life (HRQOL) [
The development of a range of therapies for MM over the past 2 decades has led to an improvement in overall survival [
As a result of treatment side effects and the complex nature of MM, the patient experience is multifaceted and varies substantially between patients and at different time points of the disease. Published information on the patient perspective of MM and its treatment is limited, making it difficult to gain insights into patient needs regarding the condition [
This study used a combined research method approach (ie, review of published literature and social media posts) to identify information in the patients’ voice on the burden and treatment of MM, the impact of the COVID-19 pandemic, and the impact on caregivers, providing an up-to-date assessment of the burden of MM from the patient perspective.
A targeted review of the published literature in PubMed (via the National Library of Medicine Gateway) and PsycINFO was conducted from November 16, 2010, to November 16, 2020, using a study-specific search strategy to identify recent information in the patients’ voice on the burden and treatment of MM. The search strategy was limited to the English language and humans and excluded commentaries, letters, and editorials. Titles and abstracts of the identified articles were screened (single screening; 1 reviewer per record), and the most recent articles describing the patient perspective on MM burden, treatment, costs, caregiver burden, and COVID-19 pandemic impact were selected for inclusion. A targeted desktop search of the American Society of Clinical Oncology and the International Society for Pharmacoeconomics and Outcomes Research websites was also conducted to identify relevant data from recent conferences that were not available in PubMed.
The targeted literature review was supplemented with a targeted review of social media data to identify patient-reported information on the patient experience of MM. A pragmatic Google search was conducted to identify patient advocacy websites hosting patient-contributed content. The Google advanced search function was used to identify web pages that included “multiple myeloma” in conjunction with the following key search terms: “patient narratives,” “patient stories,” “patient advocacy,” and “patient organization.” The results were then reviewed to identify MM patient organizations and other websites that might contain patient-reported information that described the patient experience of MM and its treatment. Website content was reviewed for relevant patient-reported information; sites presenting irrelevant patient-reported information were not included. Six relevant patient advocacy organizations were identified: CURE, The Patient Story, PeopleBeatingCancer, Myeloma Crowd, Multiple Myeloma Research Foundation, and Patient Power [
The review of patient advocacy websites and YouTube targeted patient-reported information from patients with a self-reported diagnosis of MM who discussed their experience of MM and its treatments. Posts were considered eligible for inclusion if they were shared by adults (aged ≥18 years) with a self-reported MM diagnosis, if the adult patient and not a proxy (eg, caregiver, physician, or relative) contributed to the patient-reported information themselves, if the post was in English, and if the content was relevant to patient MM experience and treatment. All video footage and blog posts were manually reviewed to determine eligibility for inclusion in the review. Where available, patient demographic and disease characteristics were extracted manually (annotation-based) from the social media posts. The content of the social media posts was analyzed thematically by independent researchers—one researcher extracted the patient-reported information and used a combined deductive and inductive approach for coding the text; a second researcher reviewed the coded text and discussed any issues with the first researcher (major themes and codes used to analyze the patient-reported information are presented in
The RTI International Institutional Review Board determined that this study did not constitute research with human participants (STUDY00021421).
The literature search identified 374 articles, of which 27 (7.2%) relevant ones were selected for potential inclusion in the review. Desktop searches of conference websites identified 5 further abstracts from the American Society of Clinical Oncology and the International Society for Pharmacoeconomics and Outcomes Research. The literature identified covered areas of disease overview and burden to the patient, burdensome symptoms, treatment expectations and goals, patient preferences on treatment attributes, cost burden to the patient, impact on caregivers, decision-making (treatment), adherence, and unmet needs.
The social media review identified 2575 social media posts, which were evaluated against prespecified review criteria, and 138 (5.36%) posts were identified as relevant for the final review (
Social media postidentification flowchart. MM: multiple myeloma; MMRF: Multiple Myeloma Research Foundation.
Summary of key topics and themes that emerged from the targeted literature review and social media review.
Topic | Targeted literature review: key themes | Social media review: key themes |
Symptom experience of MMa |
Pain (back pain and bone pain), fatigue, nausea, and dyspnea |
Pain (back pain, |
Patient HRQOLc |
Impact on physical functioning (limitations on physical activity and moving around and increased fatigue and exhaustion) Impact on role functioning (concerns regarding eating and nutrition) Impact on social functioning (disrupted day-to-day life because of exhaustion and hospital visits) Psychological and emotional impact (depression, anxiety, and reduced social satisfaction) |
Impact on physical functioning (restricted physical activity or mobility) Impact on daily life (day-to-day activities, hobbies and leisure activities, and rest) Psychological and emotional impact (impact of reaction to diagnosis [devastation and shock], fear of the future, depression, anxiety, denial, frustration, feeling isolated, anger, feeling lost, changed perception of self, and positive emotions [gratitude])
|
MM treatment experience |
Type of treatment (opioids, analgesics, chemotherapy, immunomodulatory drugs, proteasome inhibitors, CD38 inhibitors, and steroids) and treatment efficacy (analgesics helped relieve pain but were associated with side effects) |
Type of treatment ( |
Treatment experience |
Treatment impact: Function and mobility Uncertainty Disruption to daily life Psychological and emotional well-being Isolation and negative effect on relationships Financial impact Sleep disturbances Treatment side effects: Neuropathy, tiredness, musculoskeletal pain, fractures, diarrhea, and cognitive impairment Chemotherapy: gastrointestinal and cognitive side effects (chemo fog) Opioids: fatigue, constipation, and dizziness Steroids: pain, fatigue, infections, nausea, and sleep disturbances Treatment could exacerbate MM symptoms (eg, steroids), and there was an overlap between MM symptoms and side effects Treatment with opioids was sometimes stopped or reduced to prevent side effects Experience of treatment side effects can be acute but also chronic |
Treatment impact: Treatment burden (travel to appointments, isolation from family and friends, cost of medication, and chemotherapy holiday)
Treatment side effects: Neuropathy, fatigue, nausea, infection, chemotherapy-induced cognitive dysfunction (chemo brain or brain fog), sleep disturbance, chemotherapy-induced cardiomyopathy, secondary cancer, graft vs host disease, bone structural problems, water retention, gastrointestinal symptoms, low testosterone levels, blood clots, hair loss, hallucinations, vomiting, diarrhea, headaches, cytokine release storm, rash, low blood pressure, radiotherapy-induced lumbosacral plexopathy, muscle loss, aches, nosebleeds, anemia, general pain, confusion, and forgetfulness Treatment side effects were long-lasting
|
Treatment hopes and preferences |
Treatment hopes: To increase survival Treatment preferences: Increased survival, reduced side effects (physical and cognitive), lower financial impacts, independence, and convenience (home administration) Caregivers were less cost-sensitive Physicians were concerned about cost and survival |
Treatment preferences: Caution or skepticism regarding stem cell transplant, fewer drugs, chemotherapy over stem cell transplant, clinical trials to obtain the latest drugs, treatment type and burden, and therapies with a history of good outcomes |
Treatment decision-making |
Patients showed a preference for contributing to treatment decisions Sharing treatment decisions with physicians was preferred by patients who were not treatment-naïve Trust in health care providers was important for decision-making |
Patient having choice over treatment, physicians deciding treatment, |
Patient experience of MM during the COVID-19 pandemic |
Impact on treatment (reduced access to hospitals for administration) Impact on daily life (pandemic restrictions and boredom) Emotional impact (anxiety surrounding hospital visits and feelings of loneliness, stress, and missing family) |
Impact on daily life: Following the COVID-19 guidelines, minimizing time spent outside (eg, walks and shopping), missing out on social life and seeing family and friends, avoiding gyms, and limited information and support from the government Emotional impact: Feeling nervous or vulnerable because of MM, feeling safe and confident, worrying about exposure, anxiety, and fear of the immediate future (eg, impact of COVID-19 on cancer) Impact on treatment: Treatment as usual, delayed treatment, changes to telehealth medical appointments, adaptations to health services, cautiousness over immunosuppression preparing the patient for COVID-19, and limited or no guidance on treatment delivery updates |
Impact on caregivers |
Emotional impact (uncertainty about the future, isolation, stress, and frustration about the disease prognosis and while waiting for test results) Impact on daily life and work life (hospital visits and running the house restrict time for work and life) Financial impact (reduced time to work) Physical impact (tiredness and fatigue) Strain on relationships (hiding feelings, trying to stay positive, and keeping information from the patient) |
Strain on caregiver and strengthened relationship |
aMM: multiple myeloma.
bThe text in italics indicates themes identified in the social media review that were not identified in the literature review.
cHRQOL: health-related quality of life.
dCAR-T: chimeric antigen receptor T-cell.
It is well established that MM is associated with burdensome symptoms, and both the literature (5/27, 19% of the articles) and patient-reported information (44/76, 58% of the patients) identified neuropathy, tiredness, nausea, fractures, and back pain as common MM symptoms [
Pain, from day to day, is always there, at some level or other, for me.
I have fatigue, and people ask me, “Well, how are you able to go out and walk 3, 5 miles, ride your bike, go to the gym?” et cetera. Um, I really push myself, and then I get home, and I collapse.
Compared with the general population, patients with MM reported a reduced HRQOL [
Symptoms of MM substantially affect physical function; this limits daily activities and causes psychological distress [
Key areas of health-related quality of life (HRQOL) reported by patients with multiple myeloma (MM; source: social media review; N=76).
Area of HRQOL affected | Patients, n (%) | Example of areas of life affected | Quotes from patients with MM from social media |
Physical functioning | 11 (15) |
Restricted physical activity and mobility Walking Stairs Running and lifting and carrying |
“I can’t even...sit down or stand up from my laying position. I can only lay down on the bed with limited movement.” (Male patient, age NRa) |
Daily activities | 9 (12) |
Hobbies and leisure Sports and fitness Rest New “norm” |
“I have to limit myself now. That can be a struggle...I don’t like not being able to do some of the things I used to be able to do.” (Female patient, age NR) |
Work finances | 8 (11) |
Inability to work Employment issues Financial burden |
“I had to give up the dream of both starting a health spa...Instead, just surviving multiple myeloma became my full-time job.” (Female patient, aged 52 years) |
Relationships | 13 (17) |
Change in relationships Change in roles Lack of understanding Loss of friends |
“It put a lot of stress and strain on our relationship...He [partner] became more of a caregiver while I became a patient.” (Female patient, age NR) |
Psychological and emotional impact | 26 (34) |
Reaction to diagnosis (devastation and shock) Fear of the future Uncertainty Change in self Mood |
“There is a really important psychological aspect to it...If you’re feeling down, miserable...you notice your pain a lot more. There’s no doubt I do.” (Male patient, age NR) |
aNR: not reported.
The prognosis of MM has greatly improved in recent years as a result of the changing myeloma treatment landscape, which has seen the development of a range of treatment options. However, according to the published literature, patients on these treatments experience unpleasant side effects or symptoms that they attribute to their medication and that result in negative impacts on patient HRQOL [
In total, 11% (3/27) of the published studies described that patients receiving disease-modifying therapy (eg, chemotherapy) experienced physical effects, including severe tiredness, musculoskeletal pain and fractures, and neuropathy that affected overall function and mobility [
Since the literature review was conducted, numerous articles have been published discussing patient experience with disease-modifying MM treatment; in these articles, the negative effects attributed to treatment are still being reported [
Analgesics are often prescribed for the relief of bone pain owing to MM or pain caused by chemotherapy. However, in both the literature and patient-reported information (7/76, 9% of the patients), patients who had been prescribed opioids reported that they experienced fatigue, constipation, dizziness, and drowsiness, which they associated with their treatment. These treatment-associated symptoms were considered particularly burdensome and affected HRQOL [
The published literature and patient-reported information also identified a range of negative effects that patients associated with the use of steroids. Symptoms such as pain, fatigue, infection, nausea, and sleep and mood disturbances were associated with steroid therapy by patients, particularly those who received dexamethasone [
Dexamethasone is a steroid and I hated it. It had the opposite effect on me that it should have. It made me exhausted instead of wired. It also made me very puffy, and I had some hyperpigmentation.
Patients who spent time in the hospital with symptomatic MM (N=21) and had received pain medication were assessed in a study that used semistructured interviews conducted by clinicians [
The patient-reported information (22/76, 29% of the patients) indicated that the negative effects attributed to treatments varied in intensity, were long-lasting, and could build up over time:
My feet are continually numb on the bottom...I mean, it’s just—there’s little things that drive you nuts, and you can manage to a point, but that’s about as far as it goes.
I live with 5 serious...long-term and late-stage side effects.
The varying intensity and impact of treatment side effects add uncertainty to patients’ lives [
The patient-reported information (14/76, 18% of the patients) included social media posts that discussed the range of limitations and day-to-day life burdens resulting from treatment, including loss of independence (1/76, 1%), diminished psychological well-being (4/76, 5%), disruption because of medical appointments (1/76, 1%), isolation from family and friends (2/76, 3%), and the cost of medication (2/76, 3%). Some patients (2/76, 3%) reported being able to continue working during treatment, whereas others (5/76, 7%) were able to return only after treatment. Patients described taking “treatment breaks” to be free from the negative symptoms associated with treatment so that they could participate in important family activities and life events. The variability in the impact of treatment means that patients are unable to plan for the future and are constantly preoccupied with the threat of physical deterioration [
“And then we started with a treatment protocol. Suddenly, your independence is taken away from you. Your entire life is taken away.” [Female patient, aged 57 years]
“Now I’ve had this window where I haven’t had treatment, I realize how much different I feel by it not weighing you down all the time, and frustrating you that you can’t do what you want to do.” [Female patient, age not reported]
“During nontransplant times of my life in the past year, or couple months, where I’ve still been receiving treatments, but they were treatments where I was still able to work, and I was very grateful for that.” [Male patient, age not reported]
“The main reason why I want to take a break [from lenalidomide treatment] is, next month, my son is getting married, and I’m really hoping that this break will help simmer down my stomach, because I certainly don’t want to be sick at my son’s wedding.” [Female patient, age not reported]
Patients’ treatment experience can also be influenced by factors such as efficacy and formulation. Of the 76 patients who contributed to the patient-reported information, 41 (54%) discussed treatment experiences—treatment effectiveness, impact on health, and treatment administration were key factors of importance:
The doctors that I saw thought that the first transplant would be the best route to go at the time...but unfortunately, 2 months later, the cancer returned.
I had come to realize that although chemo had kept me alive for 5 years, it was also slowly destroying my body.
The complex nature of MM treatment can mean that a range of factors affect patients’ treatment preferences, including history of efficacy and safety, formulation, and novelty of therapy. However, both the patient-reported information and the published literature asserted that increased life expectancy and tolerability are the most important factors from the patient perspective [
I would be more willing to trust something that had a long-term track record of success than something new that we really just don’t know that much about.
One of [the] things that I was considering back then was how the treatment was given. And one of the treatments that I chose was an oral treatment, because that allowed me to continue to be employed.
The literature (4/27, 15% of the articles) reinforced increased survival as the highest priority for treatment [
Treatment preferences can vary among patients with MM, their physicians, and caregivers, as demonstrated in a study by Fifer et al [
Patients in the patient-reported information expressed high expectations for treatment outcomes, including the desire for a cure:
There is a chance for a cure, but I’m looking for a long remission, drug free.
However, patient expectations regarding high treatment effectiveness were not always met because of unexpected relapses and short remission periods. Consequently, patients were often disappointed and upset following ineffective treatment:
I’m really bummed out, ’cause 16 months, I really had thought I was gonna get it down low into a...partial response, and I’m not having that. So it is upsetting to me.
The attitude of health care professionals also played a role in moderating patients’ high expectations for treatment:
All of the nurses were really negative; the rounding team that would come around every day...they were kind of lowering my expectations. And I found myself...starting to get a little bit bummed out.
Patient preference and treatment satisfaction can also be influenced by convenience; improved treatment convenience has been shown to be related to preference [
MM has a multifaceted economic burden, and many patients have some unmet financial needs because of treatment copayments (in some countries) and travel costs, which are often highlighted as a burden. In some European countries and the United States, the treatments received by patients for MM and other comorbidities have a substantial impact on costs, which can often be greater than the patients’ ability to pay. The often-unmet financial needs of patients with MM can moderate the relationship between psychological morbidity and HRQOL [
Patients with MM generally prefer to participate in the treatment decision-making process; evidence from the published literature and patient-reported information suggests that the extent of information available regarding therapy choices and patient confidence in their treating physician are important [
The patient-reported information supports the perception that patients prefer to participate in treatment decision-making; 25% (19/76) of patients commented on factors related to treatment decisions. Patients expressed a desire to influence treatment decisions but perceived that their views were not always considered. The degree to which patients were able to assert any influence or direct their treatment paths was dependent on external factors, including their own health (5/76, 7% of the patients), relationship with the physician (3/76, 4% of the patients), and available treatment options (5/76, 7% of the patients). Some patients (8/76, 11%) discussed different treatment options with their physicians, whereas 3% (2/76) of the patients reportedly felt pressured to agree to specific treatments. Furthermore, patients reported having to become advocates for themselves in their treatment choices, particularly when they decided to stop or put treatment on hold to participate in family life events:
My oncologist gave me 8 different options...We went through the list, the pros and cons of each of those 8 options...It was very important to me to sort of understand what his thinking was and why he liked this option versus that option and so forth.
A study provided some data to suggest that patients who had previously received treatment for MM showed more of a preference for engaging in increased shared treatment decision-making than treatment-naïve patients [
The COVID-19 pandemic has challenged patients’ ability to manage their MM by further disrupting their lives, psychological well-being, and HRQOL. The literature review was conducted from 2010 to November 16, 2020; at the time of the review, no articles relating to the impact of COVID-19 on patients with MM were identified. However, the patient-reported information identified 12% (9/76) of the patients who discussed the impact of COVID-19, specifically the fact that the virus exacerbated the psychological impact of MM. Patients expressed concern and anxiety because of their increased vulnerability to infection and, consequently, took additional precautions to limit physical contact with other people:
I am hypogammaglobulinemic, as many myeloma patients are. It means that I have virtually no immune system with which to fight any infection, let alone COVID-19.
Restrictions and a medical focus on COVID-19 also impeded patient treatment because of significant disruptions and delays in medical appointments. Patients in the patient-reported information reported changes to telemedicine appointments, limited or no guidance on treatment delivery updates, and delays to transplantations and suspension of clinical trials of novel MM treatments as effects of COVID-19. However, previous experiences of patients with MM with treatment-related immunosuppression helped with the adjustment to the pandemic-specific social restrictions:
Definitely during this current time [having MM has] made things more difficult. I was getting ready to sort of...take back my life in January, but I was having some side effects from the maintenance medication, so it did get pushed back a bit, and then everything closed down. And so I’m still waiting, but I’m used to it now.
It is important to note that, since the literature review was conducted, there has been an increase in the number of articles published on the impact of COVID-19 on patients’ disease and treatment experiences for a range of diseases [
Caregivers of patients with MM can experience a substantial impact on their HRQOL as they often neglect their own needs to provide physical and emotional support, which can significantly affect emotional-, role-, social-, and work-related areas of life [
Caregivers experience fear, uncertainty, and frustration surrounding the prognosis of their relative’s myeloma, which was associated with a substantial emotional burden.
Waiting for results from tests and visits to the hospital can add further levels of emotional burden because of stress, nerves, and fear of a sudden decline in the health of their partner or family member.
Caregivers reported hiding or filtering information from the patient when communicating results about the seriousness of the myeloma.
Caregivers reported not dwelling on themselves or their own feelings and “putting on a brave face” to stay positive for their partner or other family member.
The practicalities of myeloma (eg, hospital visits and running the house) restricted daily life and work life, which was associated with a financial and physical burden for the caregivers.
Caregivers reported feeling like they had a duty to provide care on their own with no outside help.
Caregivers reported having an unmet need for specific information and communication surrounding the disease and how to properly care for a patient with myeloma.
There was an unmet need for people or organizations to turn to with problems or questions or for extra support, with caregivers having to rely on family for extra support.
Caregivers reported an unmet need for someone to talk to for updates on their family member’s condition as physicians could be too technical and more interested in the disease than in how the patient was.
Caregivers often assist in managing complex treatment regimens and monitoring side effects, which can cause a range of emotions and anxiety as well as difficulties in balancing care responsibilities and work [
Unfortunately, he became more of a caregiver while I became a patient. I didn’t like that position. I think it brought out a lot of insecurities in me—especially being in a newer marriage. It also has made us stronger throughout the process because we’ve had to get through us [sic]. We’ve been able to turn to each other and rely on each other. I trust him more. It’s made our connection more solid.
My wife bore the brunt of it (diagnosis), and it was so hard on her. I think it was surreal for her. She sold the house, we moved, she was still working, she was traveling to [place name redacted] to see me, trying to take care of our daughter who still lived at home, and so much more. A couple of years ago, I looked at her and said, “I’m okay. You need to refill your tank now. You can’t make it 1 more second.”
This review of published literature and social media data provides a unique and valuable combination of information on patient experiences and perceptions of MM and its treatment. A wide range of factors that influence patients’ experiences were identified, with the literature and patient-reported information aligning on many aspects. Across the literature and patient-reported information, patients were reported to experience a range of MM symptoms and negative effects from treatment, including neuropathy, fatigue, nausea, and back pain. Symptoms have potentially detrimental effects on HRQOL, and evidence suggested that not only are treatment side effects substantial and long-lasting, but they can also exacerbate symptoms of MM and lead to patients stopping treatment [
A number of influences can affect MM treatment preference, but both the patient-reported information and literature assert that treatment efficacy and tolerability have a strong influence on treatment decision-making from the patient perspective [
Caregivers of patients with MM experience a substantial burden and can struggle to balance care responsibilities and jobs. The published literature and patient-reported information reported that caregiving responsibilities can strain relationships with the patient, but the patient-reported information also found that relationships could be made stronger [
Unmet needs for patients with MM identified in the published literature and patient-reported information included a lack of productive time with health care professionals, with patients stating that earlier access to results and more time for appointments could help reduce anxiety and maximize discussion time [
This combined review has several limitations, one of which is that the quality of the published literature varied and was hard to determine. Some studies included only small populations and no randomization, creating the potential for issues such as selection bias; therefore, conclusions surrounding some of the results presented should be interpreted with caution. Results were also often self-reported by the patients with no clinical validation of disease- and treatment-related factors, which may confound patient-reported outcomes and presents the possibility of confirmation or recall bias. Patients were generally not studied over long periods and, as MM changes over time, the results may not be generalizable to all patients in all settings.
Across the published literature, details regarding disparities in access to health care were lacking, which represents both an unmet need and a limitation. Several studies identified sex, age, ethnicity, and social factors as an influence on the health of patients with MM (ie, findings from studies in which patients of certain populations were overrepresented could be distorted). There were minimal data regarding single patients who live alone, for whom the burden of MM may be heightened. Furthermore, male patients are often overrepresented in MM studies, and wealthier, more educated, and proactive patients generally participate in studies investigating the patient voice. Health disparities could exist for women, patients who are less active in speaking on or addressing their condition, or those who are poorer and less educated [
Social media data exist outside the formal research context, are not generated to answer a specific research question, and are not regulated or peer-reviewed. There are also limitations in the search being restricted to English-language–only patient-reported information and, in terms of sampling in particular, self-selection bias; social media contributors may include a narrow band of patients who are willing to share their narratives on the web. Social media data are also reliant on patient self-identification and self-reporting, which may not be verifiable. Furthermore, social media data are limited by the availability of patient demographic and clinical characteristics. Age was not reported for all patients included in the study; therefore, it is unknown whether potential age-related aspects of patients’ MM and treatment experience may have influenced some of the key themes that emerged from the patient-reported information [
This study provides valuable and up-to-date information on patient experiences and perspectives regarding the impact of MM and its treatment. Our findings are consistent with recent publications investigating patient perceptions of MM and its treatment [
The data from this combined review highlighted that the patient journey in MM is multifaceted; patients’ HRQOL is impeded not only by the symptoms and progression of the disease but also by treatment-related side effects, which can have a substantial and long-lasting impact on patients’ lives. The patient perspective on participation in treatment decisions is an important factor in the journey, and our research shows that, in published literature and on social media, patients appreciate involvement in deciding treatment options. Our review highlights the importance of further understanding patient perspectives on MM as this is an important area for improving the overall quality of care for patients.
Social media review key search terms.
Major themes and codes.
health-related quality of life
multiple myeloma
relapsed and refractory multiple myeloma
This research was funded by Pfizer Inc. Employees of Pfizer Inc participated in designing the study, interpreting the data, and writing the manuscript.
The data sets generated and analyzed during this study are available from the corresponding author upon reasonable request.
All authors were involved in the study conception or design or the acquisition, analysis, or interpretation of the data. All authors contributed to the drafting of the manuscript and approved the final version.
ML, RC, CL, and AH are employees of RTI Health Solutions, and this study was performed under a research contract between RTI Health Solutions and Pfizer Inc. TB, CM, and AN are employees of Pfizer Inc.