An Integrative Education Program for Patients with Renal-Cell Carcinoma and Their Caregivers: A Scoping Review

Marco Carlos, MA, OPN-CG

Clinical Care Director

Urology Austin, Austin, TX

Kathleen Meade, BSN, RN, OCN

Office Practice Nurse, Genitourinary Oncology

Memorial Sloan Kettering Cancer Center, New York, NY

Jordan Henderson, BSN, RN, OCN, ONN-CG

Director, Program Development

Academy of Oncology Nurse & Patient Navigators, Cranbury, NJ

Emily Gentry, BSN, RN, OCN, HON-ONN-CG

Executive Director, Strategy and Operations

Academy of Oncology Nurse & Patient Navigators, Cranbury, NJ

Background: Renal-cell carcinoma (RCC) is among the 10 most common cancers for men and women in the United States and has been shown to cause considerable burden in both patients and their caregivers. Recently, studies have focused on quality-of-life (QOL) measures and the relationship with health outcomes. However, the variety of QOL components and measures is not well represented in the literature, hindering the formulation of specific questions and the development of a systematic review.

Objective: To investigate and analyze articles related to RCC patient and caregiver physical, psychological, social, and spiritual well-being published in the past 5 years. These articles will be used to provide an evidence base for the development of an integrative education tool to empower patients and their caregivers following an RCC diagnosis and throughout the continuum of care.

Methods: This scoping review considered all studies that addressed physical, psychological, social, and spiritual well-being of patients diagnosed with RCC or their caregivers. A 3-step search strategy was undertaken: (1) an initial limited search of PubMed; (2) an extensive search using all identified keywords and index terms across all included databases; and (3) a hand search of the reference lists of included articles. This review was limited to studies published in English from 2017 to 2022. Reviewers extracted data independently. Any disagreements that arose among the reviewers were resolved through discussion, or with a third reviewer.

Results: A total of 3121 articles were screened, 657 full-text publications were reviewed, and 59 relevant articles were identified. Most studies focused on physical well-being, and many articles discussed treatment and risk factors. A limited number of articles focused on spiritual and social well-being. No articles evaluating the patient/caregiver relationship were identified.

Conclusions: The most commonly evaluated QOL component was physical well-being, with only a single article each discussing social and spiritual well-being. Psychological well-being was discussed in 4 articles. A single article spanned the psychological and social domains. Inclusion of all 4 QOL components will be beneficial for developing an integrative education tool to empower patients and their caregivers following RCC diagnosis and throughout the continuum of care.

Renal-cell carcinoma (RCC) is among the 10 most common cancers for men and women, with 2022 estimates from the American Cancer Society of 79,000 new cases and nearly 14,000 deaths.¹ The global prevalence of RCC has exhibited a sustained increase, with an increasing burden on health systems, patients, and their families.^2,3 For patients with cancer, quality of life (QOL) is an important factor,⁴ and studies have shown a link between high symptom burden and poor patient QOL.^5-7 Among patients with cancer, 3 of the most frequently reported symptoms related to the disease and subsequent treatment include fatigue, pain, and depression.⁸ Findings from a recent patient survey revealed that approximately 50% of patients who experienced psychosocial impacts did not disclose them to their healthcare team.⁹ Therefore, the emotional and psychological impact of RCC on patients throughout the disease continuum likely is not well understood.

Among patients with advanced cancer, caregivers, who may include family and friends, are crucial for providing care.^10,11 Considerable time and effort are required to provide care for these patients with cancer and often lead to a negative impact on the QOL and mood of the caregivers.^12-14 Caregivers have reported psychological distress that exceeds that experienced by patients with cancer, highlighting the need to evaluate the psychological well-being of these caregivers.^15,16 As a patient’s disease shows evidence of progression, the physical well-being of the caregiver has been reported to decrease.¹¹ Furthermore, caregivers have reported experience with social demands related to financial burden, social support, and relationships.¹⁷ Together, these findings support the need for improved understanding of the burden and QOL of caregivers of patients with cancer, and specifically RCC.

After diagnosis, patients work with healthcare providers in a shared decision-making process to determine an individualized course of care that is aligned with the patients’ values. When patients participate in this shared process, studies show increased levels of trust, more realistic treatment expectations and perceptions of risk, improved clinical and patient-reported outcomes, and increased treatment adherence and subsequent patient satisfaction.^18,19 The first step in this complex shared decision-making process is to acquire the knowledge to support both value- and preference-based decisions, which can be achieved via evidence-based educational tools. Findings from a recent patient survey revealed that approximately 30% of patients had no involvement in their treatment decision, and over 40% did not understand their RCC subtype.⁹

Patient education has been shown to facilitate understanding of the disease, including risk factors, the risk/benefit profile of treatments, and prognosis; improve knowledge and cognitive skills, including problem-solving and self-efficacy; and facilitate communication.²⁰ Caregivers, social networks, and family have been shown to influence health-related decisions. Therefore, health education should be developed with consideration of barriers and patient benefits, as well as external influences from family members and clinicians, to contribute to enhanced productive behaviors, including self-care and adherence, which have been reported to improve patient outcomes.²¹

Therefore, the objective of this scoping review was to investigate and analyze articles related to RCC patient and caregiver physical, psychological, social, and spiritual well-being published in the past 5 years. These articles will be used to provide an evidence base for the development of an integrative education tool to empower patients and their caregivers following an RCC diagnosis and throughout the continuum of care. These components were chosen based on a previous study evaluating how a family caregiver’s QOL is impacted by their role as a caregiver of a patient with lung cancer.²² A preliminary search for existing scoping reviews on the current topic was conducted using PubMed and Cochrane Database of Systematic Reviews; no previous scoping review on this topic was identified.

Methods
Inclusion Criteria

This scoping review considered all studies and interventions, including quantitative studies, qualitative studies, and systematic reviews, implemented and evaluated in the context of physical, psychological, social, and spiritual well-being of patients diagnosed with RCC or their caregivers.

Search Strategy

A 3-step search strategy was undertaken: (1) an initial limited search of PubMed; (2) an extensive search using all identified keywords and index terms across all included databases; and (3) a hand search of the reference lists of included articles. This review was limited to studies published in English from 2017 to 2022. The search was conducted in the PubMed database. Keywords used in the search are shown in Table 1.

Identified articles were then assessed for relevance to the review based on information provided in the title and abstract by 2 independent reviewers. If the reviewers had doubts about the relevance of a study from the abstract, the full-text article was retrieved. The full article was retrieved for all studies that met the inclusion criteria of the review.

Two reviewers independently examined the full-text articles to determine whether they met inclusion criteria. Any disagreements that arose among reviewers were resolved through discussion. Studies identified from reference lists were assessed for relevance based on their title and abstract.

Extraction of Results

From included articles, data were extracted using a charting instrument aligned with this research objective and question. Study details and characteristics extracted included the following: author, year of publication, country of origin, study design, sample size and statistical methods, purpose/results/findings, limitations, and conclusions and implications. The QOL component was also identified. Two reviewers independently extracted data. Any disagreements that arose among reviewers were resolved through discussion.

Results

After removing duplicates, 3121 articles were screened for inclusion. A total of 657 articles met the inclusion criteria based on titles and abstracts, and full-text publications were then reviewed. After review of full-text publications, 59 relevant articles were identified. Figure 1 shows the study selection process.

Country of Publication

Most of the studies included in this scoping review were conducted in the United States or multiple countries, as shown in Table 2.

Research Design

A total of 1 study used a qualitative design, 7 a quantitative design, and 51 used review or systematic review methodology. Table 3 shows the studies included in this scoping review by study design.

Year of Publication

Included studies were published between January 1, 2017, and May 4, 2022. Figure 2 shows the year of publication of studies included in this scoping review. Figure 3 shows studies categorized by QOL domain and publication year.

 

Contexts and Populations of Studies

The majority of the analyzed studies were review articles focused on patients with RCC. Overall, 15 of the 59 analyzed studies involved meta-analyses spanning multiple RCC patient populations. No studies focused on caregivers.

Physical Well-Being

We identified 54 articles evaluating the physical QOL component for patients with RCC and their caregivers.^23-76 Of these articles, 9 discussed survivorship and palliative care, 12 discussed risk factors, and 17 discussed treatment. The largest number of articles was published in 2021 (n = 16), followed by 2018 and 2019 (n = 11 each), 2020 (n = 6), and 2017 and 2022 (n = 5 each).

General topics covered in articles related to treatment include information about risk/prognostic factors, subtypes, and genetics. Other articles discussed treatment options and biomarkers. Together, these articles highlight patients’ needs for education in these areas related to physical QOL, including risk and prognostic factors, treatment modalities, and biomarkers.

Psychological Well-Being

We identified 4 articles evaluating the psychological QOL component.^77-80 There were 2 articles published in 2020 and 1 article was identified for both 2017 and 2018. Overall, 1 article spanned the psychological and social domains.

These articles focused on general themes of adjusting to life with RCC, QOL, and distress. Taken together, these articles demonstrate patients’ needs for support in areas related to the psychological QOL component, including the impact of clinicians on patient support throughout the illness trajectory, and the risk of distress and its relationship with outcomes.

Social Well-Being

A single article evaluated the social QOL component for patients with RCC and their caregivers.⁷⁷ Expressive writing may be particularly beneficial regarding QOL outcomes for patients who have social support available, including those with depressive symptoms. Notably, expressive writing may not be beneficial and may be contraindicated in patients who lack social support. This article provides evidence for patients’ needs for education related to social QOL.

Spiritual Well-Being

Only 1 article was identified that evaluated the spiritual domain.⁸¹ This study demonstrated that behavioral coding of expressive writing samples supported the literature showing that positive religious coping is common among patients with cancer. Positive religious coping and religious engagement are associated with the religiosity/spirituality index. Negative religious coping, although rare, has been associated with psychological distress.

Discussion

The purpose of this scoping review was to investigate and analyze articles published in the past 5 years related to RCC patient and caregiver physical, psychological, social, and spiritual well-being. These articles will be used to provide an evidence base for the development of an integrative education tool to empower patients and their caregivers following RCC diagnosis and throughout the continuum of care.

To this end, 59 studies, including 10 systematic reviews, were included. Most studies were published in 2018 and 2021. Each year from 2017 to 2021, at least 5 studies were published related to physical well-being, which was the most common domain represented in the current scoping review.

Overall, these findings have clearly highlighted the needs of patients related to the physical, psychological, social, and spiritual domains, as well as the importance of including this information as part of a patient education tool that is provided to patients and their caregivers following a diagnosis of RCC.

It has been established that a diagnosis of cancer contributes to significant burden, and in particular, burden related to QOL, on both the patient and the caregiver.^4,12-14 However, in this scoping review, no studies focused on effects in caregivers, but instead focused on QOL effects in patients alone.

This scoping review revealed the lack of studies focusing on social and spiritual well-being, which limits the ability for inclusion in a patient education tool. Review articles focused on spirituality have highlighted associations between expressive writing and QOL benefits or positive religious coping.^79,81 However, further studies are needed.

Limitations of the Included Studies

Because it is not relevant for a scoping review, the methodological quality of the included studies was not assessed. However, some limitations should be reported to provide important information for future research studies or systematic reviews. Limitations include small sample sizes, study design, and the absence of assessment of long-term effects.

These limitations have the possibility to diminish the rigorous assessment of the impact of interventions related to QOL and should be addressed based on the fact that a lack of scientific evidence supporting their effectiveness is a barrier to implementation in a patient education tool.

Limitations of the Scoping Review

First, this scoping review was limited based on the inclusion of studies only published in English. Articles published in other languages might have provided important information for this review. Another limitation is that only studies published in the past decade were included. Older studies investigating QOL components may have been important for this review.

Furthermore, because the objective of this scoping review was to examine studies related to RCC patient and caregiver physical, psychological, social, and spiritual well-being, no rating of methodological quality is provided, and therefore, no recommendations for practice can be graded.

Conclusions

This scoping review was designed to evaluate studies related to RCC patient and caregiver physical, psychological, social, and spiritual well-being published in the past 5 years to provide an evidence base for the development of an integrative education tool to empower patients and their caregivers following RCC diagnosis and throughout the continuum of care.

A total of 59 relevant studies were identified. The most frequently evaluated QOL component was focused on physical well-being. Most articles were reviews and systematic reviews, with or without meta-analyses in patients with RCC. The articles highlighted patients’ needs for information regarding physical (eg, treatment, risk factors, biomarkers), psychological (eg, clinician impact on QOL, effects of distress on QOL, the relationship between distress and outcomes), social (eg, impact of social support on QOL outcomes), and spiritual (eg, positive religious coping is common) QOL components. Together, these findings provide an evidence base for the development of an integrative education tool to empower patients and their caregivers following RCC diagnosis and throughout the continuum of care.

Implications for Research

Future primary studies should focus on social and spiritual well-being in patients with RCC, and on all domains in caregivers of patients with RCC. Importantly, studies should clearly identify intervention characteristics, study design, context, and patient diagnosis.

Because most of the studies were review articles, further research is needed to determine the effectiveness of interventions designed to assess specific QOL components. Furthermore, systematic reviews on patient/caregiver relationships, focusing on different QOL components, and the social and spiritual well-being of patients with RCC should be performed to provide the most accurate and up-to-date available evidence regarding the effects on QOL and to guide clinical practice.

Additional information on management of RCC, including side effects, the fact that the patient is receiving lifelong treatment, and financial toxicity, is necessary for educating patients and managing their expectations. Bolstering patient responsibility in terms of medication adherence is also needed to improve patient outcomes.

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