Patient and carer experience of living with multiple myeloma
Research type
Research Study
Full title
Exploring patient and carer perspectives of how being diagnosed, treated for and living with multiple myeloma affects their lived experience.
IRAS ID
313372
Contact name
Rick Harris
Contact email
Sponsor organisation
Pfizer Biopharmaceuticals Group
Clinicaltrials.gov Identifier
CEP - 200263 , Sponsor No
Duration of Study in the UK
0 years, 11 months, 0 days
Research summary
Research Summary
Myeloma is a rare and progressive blood cancer. Approximately 5,800 new cases are diagnosed each year and 24,000 people are living with myeloma in the UK. Many patients experience pain, bone fractures, have an increased risk of infection, become anaemic (causing fatigue and weakness), have elevated blood calcium levels (causing mind and memory problems), and kidney failure, amongst other symptoms. Whilst several anti-myeloma therapies have been developed which have improved survival, a diagnosis of myeloma can be extremely challenging for patients and their families, as they attempt to understand their diagnosis, make patient-centered treatment decisions at each stage of their disease and access optimal care.
Unfortunately, there remains no cure for myeloma. Rather, treatment is available to manage the symptoms with the aim of remission.
Whilst previous research has identified the need for people with myeloma to constantly adjust to their changing experience, no previous literature has explored the patient journey and engagement with healthcare, from diagnosis through multiple treatments and relapses, in a comprehensive manner. Indeed, the psychological and social impact of relapse and uncertain nature of myeloma, the gradual personal learning of myeloma over time, and the capacity to cope with diagnosis and subsequent repeated relapses remains unexplored.
This study aims to examine the patient journey of three groups of patients from diagnosis through treatment (i.e. Group 1: newly diagnosed, Group 2 with experience of two therapy types, and Group 3 with experience of three types of therapy without achieving lasting full effectiveness). This study will use one-to-one interviews with 36 participants (including both patients and some of their carers). It aims to further understand the nature of living with myeloma, how this can change over time, how healthcare services may impact patients and their carers, and how these healthcare services might be improved.
Lay summary of study results
Full study title
Exploring patient and carer perspectives of how being diagnosed, treated for and living with multiple myeloma affects their lived experience.Who carried out the research?
This research was conducted by Customer Faithful Ltd and sponsored and funded by Pfizer UK.Why was this study done?
What is Multiple Myeloma?
Multiple myeloma, also known as myeloma, is a rare, progressive blood cancer with 5,800 new cases each year. Symptoms include pain, weakened bones leading to increased risk of fractures, recurrent infections, anaemia, raised calcium levels, and kidney failure. Although no cure exists, anti-myeloma therapies can improve survival rates. Nevertheless, being diagnosed with myeloma can be very physically and emotionally difficult for both the patient and their family, as they try to understand their diagnosis, make complex treatment decisions, and get the best care possible.What was the purpose of this study?
Previous research with people diagnosed with multiple myeloma has shown their need to constantly adjust to the progression of the disease. However, there is a lack of research into the psychological and social impact of myeloma, from diagnosis to multiple treatments and relapses. Because of this, not much is known about how people cope with myeloma and the uncertainty it brings, this impact of this on their quality of life, and the medical, psychological and social priorities of patients and their families.The study aimed to achieve three objectives:
1. Identify what treatment outcomes are important to patients and carers
2. Identify how patients and carers describe what contributes most to their quality of life
3. Identify important aspects of diagnosis, treatment and care provision as defined by patients and carers, including where the NHS system functions well, and/or any shortfalls in unmet needs for patients who have received multiple types of Myeloma therapyThe study aimed to explore how patients and carers living with myeloma experienced their healthcare and the psychological impact of this, across a range of different treatment stages.
What happened during the study?
How was the study conducted?
Myeloma can be classified in terms of people’s stage of treatment. This research focused on three groups: 1) People who were newly diagnosed with myeloma (received their diagnosis in the previous 12 months), 2) People with myeloma whose disease had not responded to or had relapsed after two of the three major classes of myeloma treatments, (classed as ‘double-class refractory’, or DCE), and 3) People with myeloma whose disease had not responded to or had experienced relapse after, receiving all three of the key myeloma treatments (defined as ‘triple-class refractory’, or TCR).The study used in-depth interviews with participants diagnosed with myeloma and family carers to explore their personal experiences of living with myeloma. Each interview explored participant journeys from early symptoms and diagnosis, through to receiving treatment, how they navigated care pathways and defined treatment success, and how they maintained quality of life.
The analysis studied both the unique and shared experiences discussed in the interviews, enabling themes to be developed that captured the commonalities and key concerns across everyone’s experiences. After the key themes were developed, artificial intelligence (AI) computer software was used to analyse the participant interviews, identifying feelings and emotions used in their language. This enabled the identification of patterns in how participant felt at different stages of their treatment.
Patient and Public Involvement
Myeloma UK supported the research throughout, through its patient advisory groups.
Their Patient and Carer Research Panel helped clarify the interview questions and information provided for the participants. Their Service User Advisory Group gave feedback on the analysis results and reports, which helped ensure that the findings were accurate reflections of living with myeloma and were reported in a clear and transparent way. These groups were comprised of people with personal experience of myeloma, or of supporting people with myeloma.Where did the study take place?
The study was conducted in the UK, with all interviews conducted via videoconferencing software.When did this study take place ?
The interviews took place throughout February – July 2023.Who participated in the study?
Eight people newly diagnosed with myeloma and three carers took part in interviews focused on the experiences of those newly diagnosed.
Nine people with DCE myeloma and three carers took part in interviews focused on the DCE experience.
Seven people with TCR myeloma and three carers took part in interviews focused on the TCR experience.How long did the study last?
Interviews lasted up to two hours. The data collection for the study took 6 months to complete. After this, the research team analysed the data, and the Sponsor began reviewing the information collected. A report of the results was created, and this document is a summary of that report.What were the results of the study?
Objective 1: Identify what treatment outcomes are important to patients and carersThere were multiple treatment outcomes that were important for patients and carers to manage. These included:
• Pain and fatigue – across all cohorts, patients and carers highlighted experiences of pain (especially bone pain and neuropathy) and fatigue, reflecting on these as important drivers of their ability to fully engage in life. Fatigue was a widely reported symptom and side effect of chemotherapy. Pain and fatigue management was a learned process as they gained familiarity with their response to chemotherapy.
• Mobility – for all cohorts, mobility was key in enabling participants to continue doing what they loved and drew meaning from before diagnosis and was a priority in their treatment. Reduced mobility impacted simple activities such as dressing and cleaning oneself, through to engaging in hobbies or trips.
• Lengthy remission – the ultimate goal for all participants was to achieve remission for as long as possible at each round of treatment. Whilst participants recognised the ‘treatable but not curable’ nature of myeloma, they were often actively aiming to understand their next treatment option and possible clinical trials that they might be eligible for, especially those who were at TCR stage (see objective 2 for more information).
• Minimal treatment side effects – Participants across all cohorts often reflected on the unpleasant side effects induced by treatment that they wished to minimise or avoid where possible. Often, participants discussed trying to alter their regime around their lifestyle preferences in order to be able to engage with life as fully as possible with minimal impact of side effects (see objective 2 for more information).Key opportunities and recommendations identified in objective 1 are:
• Improved recognition and proactive management of cancer fatigue and pain management e.g. by providing targeted support to help with sleep, pain management, and dietary guidance to boost energy levels.
• Regular pain management reviews with the patient, including materials to help patients describe and define different types of pain and how it impacts their quality of life would be beneficial. Pain management options should go beyond just medication, especially given patient concerns about their addictive and mental health impact – a full range of options and access channels should be provided to the patient from diagnosis onwards.
• The impact of impaired mobility on quality of life is significant and yet was not perceived as a priority within care plan pathways. Where experienced, patients were positive about psychologist and physiotherapist support as helpful in learning and applying approaches to adapting their activity to promote mobility. Greater availability and awareness of such services would improve quality of life, and more sense of control in everyday activities.
• There is a need for high quality treatment that maximises potential remission with minimal side effects through more clinical trials.Objective 2: Identify how patients and carers describe what contributes most to their quality of life
• Psychological wellbeing and support - across all three cohorts, psychological wellbeing and support were central to adjustment to the diagnosis of myeloma and the treatment/care pathway. However, all participants emphasised the lack of such support, with care teams maintaining focus on information provision and signposting rather than providing dedicated psychological components. Patients were often quickly referred for treatment without formal emotional check-ins and were left feeling distressed, uninvolved in their care, and lonely. These feelings extended to carers, who often felt left behind as they prioritised their family member’s health and wellbeing first. This experience was often reiterated at relapse after treatment and often reported fear and uncertainty about the future (especially those at TCR stage). Participants drew attention to their need for feelings of control and ways to enhance their wellbeing and quality of life, including being able to engage as fully as possible with their everyday life, living ‘in-the-now’ to make the most of life, striving for reduced pain, greater ability to travel, better quality of life and improved mental well-being. This also meant that participants were often looking out for the next possible treatment opportunities in clinical trials, though these were often difficult to find and understand the potential for their own individual circumstances (e.g. inclusion criteria were confusing and often restrictive).
• Treatment side effects - side effects were also a common concern that impacted quality of life across all cohorts. Participants highlighted how side effects such as insomnia, fatigue, mood swings and energy peaks and crashes impacted their physical, mental, and emotional capability. Side effects were highly disruptive to daily life, especially steroids. Participants found that being treated with steroids such as Dexamethasone as part of their chemotherapy caused dramatic mood swings and impacted their energy levels, finding that these side effects risked damaging family relationships. These often resulted in participants not feeling able to engage in daily activities or having to adjust daily life to accommodate treatment and side effects (e.g. not spending time with family after taking steroids because of their impact on the participants' mood). Participants, especially those at DCE stage, expressed a desire for treatment to accommodate their lifestyle, and to be adapted according to their preferred days, so that they could minimise disruption and make the most of life alongside treatment.Key opportunities and recommendations identified from objective 2 are:
• Targeted practical and psychological support for coping strategies during diagnosis, remission and relapse may help patients achieve the necessary acceptance and recalibration of their lifestyle. A regular check in on psychological wellbeing during appointments with a specialist member of staff could help patients feel supported and potentially identify opportunities for mental health intervention earlier.
• Carers would benefit from tailored, one-to-one support to understand the disease, how they might be affected, and where to find support.
• Personalised treatment is required to accommodate lifestyle preferences and enhance patient wellbeing and sense of autonomy and control
• Clinical trials are a key part of patient and carers hope and optimism for the future but can be difficult and complex to access. Improved awareness and visibility of these (e.g. via a central resource) may support such positive emotional wellbeing, including emotions such as hope, trust, faith, confidence and safety.Objective 3: Identify important aspects of diagnosis, treatment and care provision as defined by patients and carers, including where the NHS system functions well, and/or any shortfalls in unmet needs for patients who have received multiple types of myeloma therapy
• Diagnosis delays - participants across all three groups reported feelings of trivialisation of early symptoms, which contributed to delays in being diagnosed with myeloma. This highlighted the need for greater awareness and recognition of myeloma by GPs to reduce delays in diagnosis.
• Clarity of information – for those newly diagnosed, participants highlighted the need for clear, transparent communication and information provision. In the early stages of diagnosis and treatment, information to support patients in accessing and understanding test results was considered essential in the lead up to a diagnosis and ongoing monitoring. The diagnosis was often perceived as a “whirlwind”, reinforced with scary language such as “terminal” and needing “palliative care”. For those at DCE and TCR stages, at each round of treatment, clearer information was needed to help patients to make informed decisions about their care, and to understand the aim and potential impact of treatment. For example, patients described the difficulty in making decisions regarding stem cell transplant, having to weigh the benefits of a demanding treatment plan against the possibility of a (hoped for but not guaranteed) lengthy remission. Patients also reflected on how unprepared they felt for some of the most severe side effects of stem cell transplants, such as mucositis. This extended to the desire for clear information about clinical trials (especially for people of TCR status), especially about their availability and their eligibility for clinical trials. Participants also stressed their desire for health professionals to have in-depth conversations with patients about the disease, as many described being given small amounts of information before going on to find out more on their own. Participants discussed experiences of conversations with healthcare professionals that often caused them more fear than reassurance, referring to examples of doctors and consultants discussing palliative care early on. As a result, participants wanted to see healthcare professionals using more reassuring language, discussing treatment options, and emphasising the controllability of the disease, rather than inducing fear by focusing on mortality.
• Active engagement and shared decision-making in care – for participants at DCE stage, a need for clarity in how they could begin to play a role in their own care was essential. As part of this, they discussed their desire for their care and treatment to be personalised to their own personal goals and values. For example, some discussed their preference to schedule taking steroids on days, to avoid side-effects impacting their time spent with family members after school and at weekends. Participants who had experienced more rounds of treatment felt able to build confidence over time in order to take a more active role in their treatment. This also meant participants wanted to build more effective relationships with health professionals to improve information, rapport, and consistency in their care provision.Key opportunities and recommendations identified from objective 3 are:
• There is a key need to improve awareness and recognition of myeloma within general practice to reduce diagnosis delays.
• At diagnosis, more time to assess and understand the prognosis and treatment plan is required, along with a clearer description of a patient’s ‘stage’ of myeloma if possible. Provision/signposting of psychological support from the outset, including in helping to agree consent for treatment, establishing a positive mindset for the treatment journey ahead would be of benefit. Likewise, clarity at diagnosis of how the various NHS departments/sites involved fit together is needed to help patients understand the treatment/care pathway.
• Importantly, at diagnosis a positioning closer to ‘incurable but treatable’ would be accurate yet more reassuring. Patient advocacy groups such as Myeloma UK were seen as having an accessible style of explanation about the condition and could be a potential model for NHS communication style.
• Clinical teams should enhance the diagnostic pathway by giving patients greater access to disease information through patient advocacy groups and providing more clarity (e.g. using more easily accessible lay language and less medical jargon in consultations).
• Provide clear information about blood tests and results, including what they mean and what next steps might look like
• More assistance is needed to help patients make well-informed decisions about their care, including stem cell transplantation, such as a more comprehensive evidence base that compares the possible benefits of treatment against the costs (including impact on work and uncertainty of remission length).AI emotion analytics findings
Alongside the analysis of participant interviews by the research team, this study also analysed the interviews using Natural language Processing software (NLP) - a branch of artificial intelligence (AI) - that focuses on understanding text and spoken words.
The purpose of this was to explore patterns of participant emotions and identify emotion triggers that could improve the patient and carer experience.The AI software was pre-trained to categorise emotion into nine primary groups. Within these, this study identified four dominant groups - Joy and Trust contained positive sentiment, whereas Anger and Fear contained negative emotions. Together, these four groups, contained over two-thirds (68%) of all emotions identified.
It is important to recognise that whilst Joy and Trust are positive sentiment primary emotion groups, their nuance is seen in the secondary emotions. This helps us to avoid thinking of a simple interpretation of joy as happiness, as we might in everyday use.
The leading secondary emotions for Joy were Power and confidence and Optimism & Encouragement, whilst for Trust, they were defined as Confidence & Certainty and Safety. These secondary emotions reflected issues raised including:ü confidence in treatment plan after diagnosis
ü valuing supportive clinical staff
ü appreciating an improvement in energy levels achieved from starting treatment
ü patient’s own spiritual faith
ü helping others by taking part in clinical trials
ü belief in and appreciation of future treatments becoming available
ü empowered by learning how to reduce infection riskThese examples demonstrate the breadth of leading secondary emotions – such as how optimism and confidence can spring from a range of situations, including belief in themselves and others.
Whilst Fear and Anger were the primary negative sentiment emotion groups, Anxiety & Worry was the dominant secondary Fear emotion and was particularly noticeable for appearing right across the patient journey. Criticism and Resentment were the leading emotion drivers of Anger. These emotions of Fear and Anger reflected issues raised including:
x anger at misdiagnosis and delayed diagnosis of myeloma
x overwhelmed by the diagnosis itself and sudden progression to treatment
x financial worries about life insurance and critical illness cover
x fear when seeing a loved one experiencing side effects from treatment
x angry outbursts and mood swings caused by steroid medication
x fear of hospital acquired infection during COVID
x fear of stem cell transplant procedure
x frustrated by feelings of being ‘processed’ rather than treated as an individual
x worrying about access to travel and health during travel (e.g. struggling to get health insurance)
x worry that they were running out of treatment options
x carers concerned about their own mental health, when facing patient mortalityThese examples highlight the psychological burden that both patients and carers experience as they try to cope with treatment and the practical impact of living with myeloma. Patients worried for others too, such as concerns for their loved ones’ suffering, money worries and communicating well with their families.
In summary, the analysis of patient and carer emotions in the study provided many examples of where guidance and training could inform patients and carers how to improve their mental wellbeing, coping skills and establish self-confidence and agency.
In addition, many of the patient fears identified were linked to specific moments in the patient pathway. These could form the basis of targeted advice and support, communicated proactively in advance, to manage psychological burden at an early stage.How has this study helped patients and researchers?
This research has identified core areas for future research and clinical development to ensure that people affected by myeloma are well supported throughout their treatment journey. Future work should focus on these issues, including developing practical tools, in order to better support patients through the myeloma journey. This will help patients feel better able to cope, manage their symptoms, and feel more confident in working alongside their healthcare team to ensure that their preferences are acknowledged, and their voices heard.Where can I learn more about this study?
You can find out more about this study via current publications below:https://www.postersessiononline.eu/173580348_eu/congresos/BSH2024/aula/-EP_170_BSH2024.pdf
https://onlinelibrary.wiley.com/doi/10.1111/bjh.19398?af=R
Acknowledgements
We would like to thank all those who participated in this study for their time, commitment and sharing their valuable experience, without which this research would not have been possible.REC name
East of England - Cambridge East Research Ethics Committee
REC reference
22/EE/0304
Date of REC Opinion
11 Jan 2023
REC opinion
Further Information Favourable Opinion