Background: Lung cancer is the second most common cancer in the United States and has been shown to cause considerable symptom burden in both patients and their caregivers. Recently, studies have focused on quality-of-life (QOL) measures and the relationship with health outcomes.
Objective: The objective of this scoping review was to investigate and analyze articles related to lung cancer patient and caregiver physical, psychological, social, and spiritual well-being to provide an evidence base for the development of an integrative digital education platform.
Methods: A 3-step search strategy was undertaken: (1) an initial limited search of PubMed and MEDLINE; (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.
Results: A total of 1610 articles were screened, 205 full-text publications were reviewed, and 50 relevant articles were identified. Most studies focused on physical and psychological well-being. Several review articles discussed treatment algorithms and consideration for treatment of patients with lung cancer. Most of the articles evaluating the patient/caregiver relationship were related to the psychological component.
Conclusions: The most commonly evaluated QOL components were physical and psychological well-being, whereas only a single article discussed spiritual well-being. Additional research is needed related to QOL components in caregivers of patients with lung cancer. Inclusion of all 4 QOL components will be beneficial for developing a digital patient education platform for patients and their caregivers following a diagnosis of lung cancer.
Lung cancer, the second most common cancer and the primary cause of cancer-related death for Americans, invokes a higher symptom burden than other cancers.1 Studies have demonstrated a link between well-being, symptom burden, and quality of life.1-3 When patients receive a diagnosis of lung cancer, they face many cognitive and emotional challenges.4 However, the emotional and psychological impact of lung cancer on newly diagnosed patients is not well understood.
Caregivers, including family and friends, have been shown to be crucial for providing care for patients who have advanced cancer,5,6 but this often leads to a burden that negatively impacts both QOL and the mood of caregivers.7-9 At times, caregivers report psychological distress that exceeds the burden faced by patients with cancer, which highlights the importance of evaluating the psychological well-being of caregivers of patients with cancer.10,11 As a patient’s disease progresses, the physical well-being of the caregiver has been shown to decrease.6 Additionally, caregivers experience social demands related to relationships, social support, and financial burden,12 supporting the need to better understand caregiver burden and QOL.
People with a new cancer diagnosis, including non–small cell lung cancer (NSCLC), make many visits to doctors, imaging centers for scans, and laboratories for testing. Waiting for test results can be challenging for physicians, patients, and caregivers because there is a sense of urgency to start treatment. In one study, almost 20% of patients with NSCLC who had EGFR or ALK mutations started chemotherapy before biomarker results became available.13 However, studies indicate that delaying treatment for several weeks while additional testing is being performed does not affect outcomes.14,15
To improve this waiting period for patients and their caregivers, it is important to make the time productive and meaningful. Instead of sitting at home, ruminating over the diagnosis and waiting for treatment, we can hand back some options for patients to empower them and influence their cancer trajectory. The loss of control, distress, anxiety, and depression, which often follow a cancer diagnosis, may then be tackled in part by assigning tasks to the patient in the time between diagnosis and first treatment.16
Following a diagnosis, healthcare providers and patients work together to determine a course of care that is aligned with the patients’ values in a shared decision-making process. When patients participate in the decision-making process, studies have reported increased trust, more realistic perceptions of risk and treatment expectations, improved patient-reported and clinical outcomes, and increased treatment adherence and patient satisfaction.17,18 The initial step required in the 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.
Patient education has been shown to improve knowledge; facilitate understanding of the disease, including risk factors, prognosis, and the risk/benefit profile of treatments; improve cognitive skills, including self-efficacy and problem-solving; and facilitate communication.19 Family, caregivers, and social networks can also influence health decisions. Health education should be designed to consider patient benefits, barriers, and external influences from healthcare providers and family members to enhance productive behaviors, including adherence and self-care, which have been shown to improve patient outcomes.20 The Cancer Advocacy & Patient Education (CAPE) initiative aims to create a web-based library of best-practice information that providers in the lung cancer space can give to patients and their caregivers at each point of interaction.
The objective of this scoping review was to investigate and analyze articles related to lung cancer patient and caregiver physical, psychological, social, and spiritual well-being to provide an evidence base for the development of an integrative digital education platform to empower patients and their caregivers following lung cancer diagnosis.
Utilizing the Joanna Briggs scoping review method, a 3-step search strategy was undertaken: (1) an initial limited search of PubMed and MEDLINE; (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 2008 to 2018. Keywords used in the search are shown in Table 1.
The PRISMA model was applied to identify articles centered on the domains of well-being and assessed for relevance to the review using 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-text 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 between reviewers were resolved through discussion.
Extraction of Results
From included articles, data were extracted using a charting instrument aligned with this research objective and question (Table 2). Study details and characteristics extracted included the following: authors, year of publication, study design, sample size and statistical methods, purpose/results/findings, limitations, and conclusions/recommendations/implications. The QOL component was also identified.
After removing duplicates, 1610 articles were screened for inclusion. A total of 205 articles met the inclusion criteria based on titles and abstracts, and full-text publications were then reviewed. After review of full-text publications, 50 relevant articles were identified. Figure 1 shows the study selection process.
A total of 36 studies used a qualitative design, 8 a quantitative design, and 6 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, 2008, and November 26, 2018. Figure 2 shows studies categorized by QOL domain and publication year.
Contexts and Populations of Studies
The majority of the analyzed studies were implemented in oncology settings or from population-based samples. Overall, 25 of the 50 analyzed studies were implemented and evaluated exclusively in lung cancer patients, 10 in patients with lung and other cancer diagnoses, 6 in caregivers, and 9 in both patients and their caregivers.
We identified 26 articles evaluating the physical QOL component for patients with lung cancer and their caregivers.21-46 Of these articles, 3 discussed physical health/function, 4 discussed self-care, 8 discussed treatment, and 1 discussed clinical trial enrollment.
General topics covered in articles related to treatment include information about different treatment options (eg, surgery, immunotherapy), factors affecting treatment selection (eg, clinical, biological, surgeon), and clinical trial participation.22,26,28,29,36,38,44,46 Other articles discussed symptom burden, interventions to support the toleration of treatment (eg, exercise, nutrition, rehabilitation), and the effects of symptoms on health-related QOL (HRQOL).21,24,27,34,35,37,39,40,42 Together, these articles highlight patients’ needs for education in these areas related to physical QOL, including treatment modalities, symptom burden and effects on HRQOL, and interventions to support treatment toleration.
We identified 23 articles evaluating the psychological QOL component.23,25,30-33,41,43,45,47-60 Overall, 9 articles spanned the psychological and physical components, and 3 spanned the psychological and social components.
Several articles focused on general themes of the effects of palliative care, decision aids, supportive care, and multidisciplinary teams on social well-being, HRQOL, psychological distress, and health outcomes.30,32,49,51,54,57,59 Another group of articles focused on the effects of symptoms on psychological distress, fatigue, sleep disturbance, and emotional problems.23,25,31,33,43,45 Additional articles discussed patient and caregiver QOL, psychological distress, and emotional well-being.41,47,48,50,52,53,55,60 Finally, articles focused on distress prevalence and understanding of treatment goals.56,58 Taken together, these articles demonstrate patients’ needs for support in areas related to the psychological QOL component, including the effects of different care models and symptoms on HRQOL, and effects of a diagnosis on both patients and caregivers in terms of QOL and emotional well-being.
A total of 12 articles evaluated the social QOL component for patients with lung cancer and their caregivers.51,54,56,61-69 These articles evaluated support networks, employment, financial components, literacy components, socioeconomic status, and cultural components.
A common concern of “receiving confirmation as a person,” was identified by patients, centered around 4 major themes: (1) good relationships within a social network; (2) conversation enables support; (3) confidence in the situation; and (4) to manage by oneself.68 The theme of confirmation through togetherness was also emphasized.67 Other articles demonstrated the important relationship between health literacy and HRQOL,62 and the involvement of family members and the effects of cultural factors on treatment decisions.63,65 Additional articles discussed financial toxicity, increased sick leave of spouses, and social stress levels, family functioning, and relationship quality reported by caregivers.61,66,69 Finally, the substantial unmet needs of immigrants with lung cancer were noted.64 These articles provide evidence for patients’ needs for education in these areas related to social QOL.
Only 1 article was identified that evaluated the spiritual QOL component.70 Religiously affiliated patients reported better scores in the Faith subscale and items on finding strength and comfort in faith and spiritual beliefs compared with nonaffiliated patients. Nonaffiliated patients had better scores for feeling a sense of harmony within oneself. Patients who received the intervention had significantly better scores for the Meaning/Peace subscale. These results support the multidimensionality of spiritual well-being that includes meaning and faith for lung cancer patients and family caregivers regardless of religious affiliation.
It is well established that a diagnosis of lung or other cancer contributes to significant burden, particularly related to QOL, on both the patient and the caregiver.7-9,71 However, in this scoping review, only 6 studies focused on effects in caregivers, whereas 9 studies focused on QOL effects on both patients and caregivers. The remaining studies focused on QOL effects in patients alone.
This scoping review revealed the lack of studies focusing on spiritual well-being, which limits the ability for inclusion in a patient education tool. Review articles focused on spirituality have highlighted associations between spirituality or religiosity and health that are potentially causal.72,73 However, further studies are needed.
This scoping review was limited based on the inclusion of studies only published in English in the last decade. Articles published in other languages or studies published more than 10 years ago may have provided important information for this review.
Overall, our search strategy extracted a total of 1610 records, from which 205 full-text articles were evaluated, and a total of 50 relevant studies were included in this scoping review. The most commonly evaluated QOL components were physical and psychological well-being. We found 9 articles that spanned the psychological and physical components, and 3 that spanned the psychological and social components. The current literature does not provide sufficient information regarding spirituality, caregiver QOL, or the effectiveness of interventions targeting specific QOL components.
Implications for Practice
The findings from these studies will help facilitate the development of an integrative digital education platform to empower patients and their caregivers following lung cancer diagnosis. Upon completion, this education platform will be used to provide patients and their caregivers with information related to QOL components that can better prepare them and assist in the identification of interventions or tools to improve QOL throughout the disease process.
The results of this scoping review highlighted patients’ need for information regarding physical, social, and spiritual QOL components. These findings also demonstrate a continuing need for research evaluating these QOL components in caregivers of patients with lung cancer. Addressing these gaps will provide an evidence base for the development of an integrative digital education platform to empower patients and their caregivers following lung cancer diagnosis.
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