A Holistic Insight into the Caregivers of Patients with Multiple Myeloma: Burden and Opportunities for Interventions – A Scoping Review

Abstract

Multiple myeloma (MM) is considered a chronic blood cancer; myeloma patients often experience fatigue and bone pain. They may also have limited mobility, making them dependent on caregivers for everyday tasks. Patients seemed to be less involved in managing their conditions, relying on unpaid caregivers for emotional and practical assistance, while frequently ignoring their own needs. Arksey and O’Malley’s framework was used for this review. This scoping review discusses the burdens of caregivers of patients with MM. Search strategies were used in PubMed, Scopus, CINAHL, Embase and Web of Science from published research articles from August 2013 to August 2024. The data were exported, and the duplicates were excluded. Title, abstract and full-text screening were carried out. The data analysis was done qualitatively and quantitatively. The review results revealed that the caregivers, whether family members or professionals, are essential in helping patients to receive long-term care. Because the MM is chronic, caregivers frequently face high levels of stress and unfulfilled needs. Caregivers of patients with MM face a variety of burdens in terms of physical and financial strain, emotional stress and psychological distress, lack of preparedness, lack of social support and social isolation. The results of the review can be used to create supportive care interventions that address the needs of caregivers of patients with MM, who experience a significant burden.

INTRODUCTION

Multiple myeloma (MM) is an incurable, debilitating blood cancer associated with the lowest health-related quality of life (HRQoL) of all cancers. As nearly 88% of patients with MM diagnoses occurring in adults aged ≥55 years, age-associated physical decline, comorbid conditions, and social challenges play a critical role in the worsening of HRQoL.^[1,2]

Globally, MM accounts for approximately 72,453 deaths annually, representing around 1% of all cancer-related mortality. In India, the incidence is 1.2/100,000, totalling 1,983 new cases annually, classifying it as a rare cancer based on the crude rate threshold of ≤6/100,000.^[3]

Among older adults in India (aged ≥60 years), MM incidence increases with age, peaking at 9.3/100,000 in the 70–74 years’ age group, before slightly declining in those aged 75 years and above. The age-standardised rate across registries is approximately 7.4/100,000.^[4]

Both patients and caregivers experience a decrease in QoL due to MM, an incurable haematological cancer. The course of the illness is associated with the 1^st year after diagnosis.^[5] Patients with MM may receive long-term care from family members, other acquaintances or professional caregivers. The caregivers of patients with MM spend more time managing MM because the treatment is long-term, which may affect both their mental health and QoL.^[6]

Despite growing recognition of the psychological and emotional toll that MM imposes on caregivers, limited research has systematically explored how disease characteristics and long-term treatment regimens affect caregiver burden.^[7] Moreover, newly diagnosed patients with MM and their caregivers. Their caregivers experience substantial productivity losses in addition to significant obstacles related to health insurance, employment, disability and out-of-pocket treatment expenses for themselves and their families.^[8,9] Early diagnosis and timely treatment can extend survival in patients with multiple myeloma (MM) from months to years, with an average of around four years. Patients’ families are also impacted by the MM diagnosis and treatment.^[10]

Therefore, this scoping review aims to systematically explore the existing literature on the multifaceted burden experienced by the caregivers of patients with MM, to identify research gaps and to identify supportive care strategies.

MATERIALS AND METHODS

This scoping review was conducted using the five-stage framework proposed by Arksey and O’Malley, which included (1) identifying the research question, (2) identifying relevant studies, (3) study selection, (4) charting the data, and (5) collating, summarising and reporting the results.^[11] The review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Extension for Scoping Reviews guidelines.^[12] This methodology enabled a comprehensive examination of the burden experienced by the caregivers of patients with MM.

Objective

• To identify the current literature regarding the burdens encountered by the caregivers of patients with MM

• To identify the gaps in the current knowledge and suggest areas for future research.

Stage 1: Identifying the research question

What are the key emotional, psychological, physical, social and financial burdens faced by the caregivers of patients with MM?

Stage 2: Identifying the relevant study

The relevant studies based on the Joanna Briggs Institute (JBI) were included in the present scoping review. A search strategy using keywords and medical subject headings (MESH) terms was used. The literature search was conducted in five databases: PubMed, Scopus, Web of Science, Embase (Ovid) and cumulative index to nursing and allied health literature (CINAHL) (Ebsco) from August 2013 to August 2024 to identify recent articles on burdens faced by the caregivers of MM reported, thus giving an overview of the past years’ literature.

Population context and concept (PCC framework)

The PCC framework—Population (or Participants), Concept, and Context—recommended by JBI, helps in identifying the review questions.^[13]

Population

• Informal caregivers (family friends) of patients diagnosed with MM

• Studies focusing on caregivers of other diseases or cancers were excluded.

Context

Studies carried out worldwide in clinical settings, home-based care hospitals and community care settings where care can be given were considered in the present review. Institutionalised patients without caregiver involvement were excluded.

Concept

The physical, emotional, psychological, social and financial hardship that caregivers of patients with MM encounter is discussed in the present review. Burden refers to certain issues and barriers that the caregivers of patients with MM face in their role as caretakers.

Type of source

Original research, articles with a mixed-method, quantitative or qualitative study design and English-language publications were all considered. Opinion papers and studies with poor methodological quality or limited relevance were excluded. MESH terms and synonyms of keywords (Burden, Caregivers, Multiple Myeloma) and Boolean operators (AND and OR) were used.

Stage 3: Study selection

All databases’ data were transferred into RAYYAN ^[14] and the duplicates were removed. Title, abstract and full-text screening were used to analyse the data.

One reviewer screened all titles and abstracts, with full-text review carried out independently by two authors. Disagreements were resolved through discussion with a third reviewer. A PRISMA flowchart [Figure 1] depicts the selection process. After full screening, eight studies that met the inclusion criteria were included.

Figure 1:

Flow chart for the study selection.

Stage 4: Charting the data

The data were extracted using a standardised charting form [Table 1], the process was iterative, and the forms were updated based on reviewer discussions. Based on the objectives of the scoping review, quality assessment was not performed.

Table 1:

Studies included in this review.

Authors	Years of publication and setting	Study design and research methods	Aim	Results and key findings
(Bates-Fraser et al., 2023)[1]	2023, UNC-Chapel Hill Lineberger Comprehensive Cancer USA	Descriptive qualitative study, semi-structured dyad interview from 21 dyads	Explore the factors that have an impact on the quality of life for MM patients and their caregivers.	Six themes were identified: Physical burden, treatment challenges, loss of independence, caregiver burden, patient and caregiver perseverance and adjustments to a new normal were identified.
(Gatopoulou et al., 2022)[5]	2022, France, Germany, Italy and Spain	Cross-sectional, prospective, observational face-to-face interviews were conducted with 16 caregivers and 26 patients from the three period of time	To quantify the burden of illness amongst patients and their caregivers of MM	Strong support networks are essential for caregivers’ emotional, social and financial well-being of recently diagnosed MM patients.
(Martino et al., 2021)[15]	2021, Reggio Calabria, Italy	Single-centre cohort study 96 caregivers	To identify the burden of caregivers of MM patients	Three main areas of focus: the influence on everyday activities, the impact on overall health and the absence of family support.
(Hansen et al., 2023)[18]	2023, USA	Qualitative study, 4 in focus groups, caregivers of MM patients were interviewed.	The main aim is to assess the experience of MM patients and their caregivers regarding their illness progression, covering initial signs and symptoms, diagnosis, ASCT and recovery	Significant burdens were identified by the caregivers, such as financial hardship, mental stress and a lack of readiness for the demands of caregiving and worries about handling the patient’s and the stressful aspect of regular medical check-ups.
(Shah et al., 2024)[16]	2024, Genetic Alliance UK and Health wise Wales	Cross-sectional study, 183 family members/partners	To measure the current impact of MM on family members and partners.	The most common effects on family members and partners that were described included anxiety, sadness, disruption of family activities, frustration and sleep disturbance.
(Grant et al., 2024)[19]	2024, University of North Carolina at Chapel Hill’s Lineberge, USA	Qualitative design, 21 racially concordant dyads	Study aim qualitatively examines the experiences patient with MM and adult caregiver) to gain insights into these phenomena.	Four main topics emerged from the qualitative data: (1) knowledge and how it affects trust; (2) feeling more emotional and uncomfortable; (3) various views of current healthcare experiences and (4) decreasing medical mistrust.
(Pereira et al., 2020)[10]	2020, North, Center and South of Portugal	Cross-sectional survey 118 caregivers of MM patient	Assessing the quality of life in caregivers of patients with MM	Higher levels of psychological morbidity, emotional and financial unmet needs, information and burden were linked to lower quality of life.
(Serçe Yüksel and Günüşen, 2023)[17]	2023, Turkey,	Cross-sectional survey 113 caregivers	examine the impact of the financial well-being of the caregiver on the life quality of patients with MM	The financial health and quality of life of caregivers were poor. The quality of life of caregivers declined as their financial situation deteriorated.

MM: Multiple myeloma, ASCT: Autologous stem-cell transplantation, UNC: University of North Carolina

Stage 5: Collating, summarising and reporting results

A narrative synthesis approach was used to summarise the extracted data. The studies were grouped thematically based on the types of burdens reported and settings studied. The final findings were categorised into key themes: Figure 2 displays all the identified themes under the title ‘Burden on Multiple Myeloma Caregivers. All findings were reviewed and confirmed by the research team.

Figure 2:

Burden on Multiple Myeloma caregivers and opportunity for intervention.

RESULTS

The search was carried out using different search strategies in the following databases. After the full-text screening, the following information was extracted: Author, year, study design, aim and results as shown in Table 1 and Figure 2. The findings of the current review showed that caregivers had a high level of burden.

Emotional and psychological burden

Caregivers of patients with MM experienced financial, physical and emotional challenges when providing care for their loved ones. In response to increasing patient demands, caregivers often assume more responsibilities, which may result in fatigue or declining physical or emotional well-being. Many people experienced financial hardship, social isolation and stress due to their medical expenditures and limited work capabilities.^[1] Caregivers of patients with MM had substantial obstacles, particularly in the 1^st year after diagnosis. By the end of the 1^st year, half of the caregivers experienced increased stress, worry and depression. The study discovered that caregivers of transplant non-eligible patients had a greater time burden than those who cared for transplant-eligible patients.^[5]

Physical health and functional burden

MM patients, particularly those undergoing autologous stem-cell transplantation (ASCT), presented a variety of obstacles to their caregivers that can significantly impair their health. Due to the high demands of patient care, caregivers faced emotional stress, difficulty with performing everyday tasks and an adverse change in their overall health. Caregivers had varying difficulties based on the patient’s age, employment situation and lack of family support.^[15]

Caregivers of MM patients faced a huge burden, which influenced their daily lives and mental health. Their levels of stress, anxiety, depression and frustration were extremely elevated. The disease’s unpredictable nature and intensive therapies caused disruptions in work, sleep and relationships. Caregivers of patients with MM reported higher levels of distress than persons with non-malignant illnesses. Healthcare workers must be aware of their issues and offer supportive care.^[16]

Financial hardship

The financial, psychological and physical strains of caring for patients with MM were significant. Expensive medical care, losing their work and having to take care of others lowered their QoL and increased stress and anxiety. Financial difficulties directly affected their capacity to provide care. Social interventions, financial advice and policies were essential to reducing their burden and enhancing patient care.^[17]

Caregivers of MM patients faced significant emotional, physical and financial burdens, particularly throughout the ASCT recovery period. They regularly provided crucial support, such as transportation to medical appointments, daily care and emotional comfort, while also managing work and family duties. Many people were unprepared for the duties of caregiving, resulting in stress, exhaustion and financial strain.^[18]

Coping mechanisms and support needs

Caregivers often faced high levels of responsibility, substantial psychological distress and unfulfilled emotional and financial expectations. Because they felt unprepared for their duties, many caretakers experienced stress. Stress reduction and general well-being depended heavily on social support and effective coping mechanisms. Mental distress was more common amongst older caregivers, while younger caregivers were less happy with social assistance. In improving the QoL for caregivers, the study emphasised the importance of specialist therapy, including financial and psychological support.^[10]

Navigating health care and systemic barriers

The emotional and psychological difficulties faced by the caregivers of individuals with MM included medical mistrust and racial disparities in health care. The study found that caregivers’ current and past mistrust of healthcare facilities often led to higher stress levels, especially for Black and African American caregivers. Being able to navigate healthcare systems enabled people to speak out for their loved ones and make sure they get the care they need.^[19]

DISCUSSION

Caregivers of patients with MM face profound and multidimensional burdens that significantly impact their QoL. These burdens span emotional, psychological, physical, financial and social domains, with stress often beginning early in the disease course and intensifying as the illness progresses.^[20] Patients and their family caregivers (FCs) are affected by cancer treatment. Unexpectedly, caregivers may have to assume major caregiving responsibilities, which may include offering emotional, spiritual, financial and physical assistance both at home and in the hospital. FCs endure long-term separation from their homes during this caring process, as well as financial, social, psychological, spiritual and physical issues.^[17] The QoL of individuals with haematological disorders can be significantly impacted, but less is known about how these diseases affect patients’ partners and family members.^[16]

It is common for patients to need assistance from others, typically from close family members. These people are referred to as non-professional or informal caregivers. Although these caregivers play a crucial role in helping and supporting cancer patients, caregivers can also be a heavy burden on many levels, which may negatively impact their QoL. For many patients, MM has become a complex illness as a result of its difficult features and palliative therapy, especially when considering the longer life expectancy attained through better management.^[6] MM may present with bony pains and neurological deficits; hence, patients with newly diagnosed MM may be heavily dependent on their caregivers for physical and emotional support.

The diagnosis and therapy of haematological cancers differ from solid tumours. Consequently, it is challenging to determine the degree to which the requirements of patients with solid tumours and FCs overlap with those of patients with haematological cancers.^[17] Even amongst haematological malignancies, MM is different - bony involvement, older age at presentation, renal failure (may need dialysis at presentation), etc.

Interventions are required to enhance caregivers’ QoL, lessen their psychological suffering and develop flexible coping mechanisms that could enhance their shared experience as the MM disease progresses. Unfortunately, there are insufficient supportive care interventions that address the psychological needs of caregivers of patients with multiple myeloma (MM).^[6] Long-term and expensive treatment, physical dependence for even mobility, etc., make MM unique amongst the haematological malignancies.

Patients with MM are supported by their caretakers throughout their illness, but the strain on these individuals has hardly ever been studied. The lived experiences of caregivers of patients with MM are described in the present cross-sectional, multisite study of patients receiving treatment for MM and their caretakers. To reach a sample size of 127 caregivers (71.7% of females), researchers identified 156 potential caregivers. By line of therapy (newly diagnosed, two to three lines of therapy and four or more lines of therapy), they looked at prognostic perceptions, psychological distress and QoL.^[21] Furthermore, MM affects older patients, who may have poor social support systems. OA may have multiple other comorbid which may also affect the caregivers. Caregivers may also be old if they are spouses. Research on the economic burden of cancer treatment in India indicates that about 49% of total health expenditure is paid entirely out-of-pocket. Despite publicly financed health insurance schemes, many patients face substantial financial strain, leading to catastrophic health expenditures and debt.^[22] A multicentric study on the expense of cancer treatment in public hospitals across five states (Kerala, Maharashtra, Rajasthan, West Bengal and Mizoram) found that 44% of patients had to travel great distances to go to the facilities, and 75% of patients had financial difficulties. It was recommended that patients from economically disadvantaged communities receive free diagnostic and financial assistance for travel expenditures to increase therapeutic compliance.^[23] Patients still incur large out-of-pocket costs for the treatment of MM, based on an analysis of treatment costs in a public sector tertiary hospital in India. The study emphasised the need for policy interventions to reduce these financial burdens, even in public healthcare settings.^[24]

Future recommendations for intervention

Patients’ physical, social and psychological well-being can be greatly influenced by their family members or partners; this is usually overlooked and left out of healthcare planning and policy.^[16] Outpatient multidisciplinary team-led care, holistic care plans that also address psychological and emotional needs and support groups and networks are suggested as ways to enhance survivorship care for patients with MM and the psychosocial support of caregivers (Hansen et al., 2023).^[18] Special caregiver support group meetings. MM also affects older patients, who may have poor social support systems. Older adults may have multiple other comorbidities, which may also affect the caregivers. If they are spouses, caregivers may also be old. Supportive care services, whether provided independently or by integrating caregivers into already-existing supportive care programs, which are frequently designed specifically for survivors, will enhance the well-being of cancer survivors.^[25]

In addition to focusing on psychosocial and relationship issues, future couple-based interventions should consider ways to improve communication with medical professionals and strengthen couples’ capacity to advocate for the needs of their patients and partners.^[26]

To reduce the burden of MM and enhance the lives of patients and their caregivers, more educational resources, innovative therapies, and comprehensive care plans could improve the quality of care for patients and their caregivers.^[20]

CONCLUSION

This scoping review highlights the significant physical, emotional, financial and psychological challenges faced by the caregivers of patients with MM. Caregivers are often underrecognised despite playing a critical role in patient care, especially in chronic and resource-intensive conditions like MM. The cumulative impact of caregiving not only affects caregivers’ health and well-being but also contributes to the broader costs and outcomes of cancer care.

To improve the QoL for both patients and caregivers, healthcare systems must invest in caregiver support services, integrate caregiver needs into cancer care planning and implement policy-level interventions to reduce out-of-pocket treatment costs. Future research should explore evidence-based interventions tailored to MM caregivers, particularly in low-resource settings.

Funding Statement

Financial support and sponsorship: Nil.

Ethical approval:

Institutional Review Board approval is not required.

Declaration of patient consent:

Patient’s consent not required as there are no patients in this study.

Conflicts of interest:

There are no conflicts of interest.

Use of artificial intelligence (AI)-assisted technology for manuscript preparation:

The authors confirm that there was no use of artificial intelligence (AI)-assisted technology for assisting in the writing or editing of the manuscript and no images were manipulated using AI.