Caring for a patient with advanced cancer can have a significant impact on the caregiver’s physical and mental health.

 We also know from previous research that patient and caregiver mood states are interdependent.

 Thus, it is impossible to address adverse psychological outcomes in patients without also examining the caregivers’ needs. The demographics of these caregivers are changing: Men now account for 40% of the caregiver population.

Even with the rise in male caregivers for patients with cancer, little research has been done to ensure there is effective support for both male and female caregivers. Several researchers have reported that men experience fewer negative aspects of caregiving (such as depression) compared with female caregivers.

 However, this does not hold up when researching other psychological domains. A study by Kim and colleagues

 found higher distress in male spousal caregivers compared with their female counterparts when patients had worse psychosocial functioning. Additionally, male caregivers of patients with breast and gynecologic cancers reported difficulty expressing emotions to others, particularly their male friends.

 The purpose of this study was to examine the gender differences in mood states in caregivers of patients with advanced cancer.

Data were collected from a sub-sample of an Institutional Review Board—approved, nonrandomized palliative care clinical trial. The parent study recruited patients with advanced lung, gastrointestinal, or gynecologic cancer and their caregivers. Caregivers were interviewed by a research assistant who administered the Profile of Mood States (POMS)-short form. The POMS, a psychological rating scale used to assess transient, distinct mood states,11 measures 6 dimensions of mood and uses a 5-point Likert scale.

Scores are summed for each subscale. Higher scores for these subscales are representative of greater mood disturbance.

Of the 222 caregivers enrolled in the study, 152 (68.5%) were female and 70 (31.5%) were male. The majority were Caucasian, with the most common relationship to the patient being spouse/partner. We found that the male caregivers were slightly older (mean age, 60 years), more likely to be a spouse of the patient (90%), and more likely to be employed than their female counterparts. Female caregivers had a mean age of 55 years, were a spouse of the patient in 58% of the cases, and were employed in 55% of the cases.

In addition to describing the demographic similarities and differences between male and female caregivers, we examined psychological outcomes of caregiving by gender. In previous similar studies, most of the male caregivers were spouses of female patients with breast or gynecologic cancer.10 In our sample, however, 42.9% of the male caregivers were caregivers of female patients with gynecologic cancer. Our sample of male caregivers comprised caregivers of patients with lung (21.4%) or gastrointestinal (35.7%) cancer.

We found that male caregivers of patients with cancer had lower tension/anxiety scores (P = .04), lower depression scores (P = .009), and less fatigue (P = .04) than female caregivers of patients with cancer (Figure).

Female caregivers reported higher levels of tension/anxiety, depression, and fatigue. The findings regarding depression differences are similar to those reported in the general caregiver population as well as the general population. However, few studies have looked at other psychological or physical outcomes such as tension, anxiety, and fatigue.

This information is essential for clinical nurses in the oncology setting. It is important to assess all caregivers for distress, anxiety, depression, and fatigue early in the cancer care process. Although male caregivers had lower scores on these dimensions compared with female caregivers, they still reported scores higher than the general population in these domains—particularly in the area of fatigue. Clinical nurses often have the best understanding of how caregivers are faring and are often the member of the healthcare team who spends the most time with both the patient and the caregiver. As cancer care continues to rely on the efforts of caregivers, it is important for oncology nurses to assess both patients and their caregivers for indicators of stress, anxiety, and fatigue.

Our data support the work of others in showing that female caregivers are more likely to be depressed and anxious; however, it is important to note that both genders experience these negative psychological outcomes. Oncology nurses are in the best position to assess, support, and refer caregivers of patients with cancer—both male and female&mdash;to sources of support. Whether caregivers receive informal support from family, friends, or support groups or receive more formal support from a primary care provider, oncology nurses are best equipped to see that these caregivers receive the support that they need.

1. Corà A, Partinico M, Munafò M, Palomba D, Health risk factors in caregivers of terminal cancer patients: a pilot study. 

. 2012;35(1):38-47. doi: 10.1097/NCC.0b013e31820d0c23.

2. Frambes D, Given B, Lehto R, Sikorskii A, Wyatt G. Informal Caregivers of cancer patients: review of interventions, care activities, and outcomes. 

. 2017;40(7):1069-1097. doi: 10.1177/0193945917699364.

3. Jacobs J, Shaffer K, Nipp R et al. Distress is Interdependent in Patients and Caregivers with Newly Diagnosed Incurable Cancers. 

. 2017;51(4):519-531. doi: 10.1007/s12160-017-9875-3.

4. Bambauer KZ, Zhang B, Maciejewski PK, et al. Mutuality and specificity of mental disorders in advanced cancer patients and caregivers. 

5. Sharma N, Chakrabarti S, Grover S. Gender differences in caregiving among family - caregivers of people with mental illnesses. 

. 2016;6(1):7-17. doi: 10.5498/wjp.v6.i1.7.

6. Nijboer C, Triemstra M, Tempelaar R, Mulder M, Sanderman R, van den Bos G. Patterns of Caregiver experiences among partners of cancer patients. 

7. 5. Li Q, Mak Y, Loke A. Spouses' experience of caregiving for cancer patients: a literature review

. 2012;60(2):178-187. doi: 10.1111/inr.12000.

8. Pinquart M, Sorensen S. Gender Differences in caregiver stressors, social resources, and health: an updated meta-analysis. 

. 2006;61(1):P33-P45. doi: 10.1093/geronb/61.1.P33.

9. 7. Kim Y, Loscalzo M, Wellisch D, Spillers R. Gender differences in caregiving stress among caregivers of cancer survivors. 

. 2006;15(12):1086-1092. doi: 10.1002/pon.1049.

10. Lopez V, Copp G, Molassiotis A. Male Caregivers of patients with breast and gynecologic cancer. 

. 2012;35(6):402-410. doi: 10.1097/ncc.0b013e318231daf0.

11. McNair D, Lorr M, Droppleman L. Profile of Mood States. 1971. 

Educational and Industrial Testing Service

Articles

Caregivers' Mental Health Varies by Gender

Amy R. Lipson, PhD, is a senior research associate, and Sara L. Douglas, PhD, RN is the Arline H. & Curtis F. Garvin Professor in Nursing Excellence and assistant dean for research at the Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, Ohio.

Gathering data on goals of care for patients with advanced cancer throughout the illness trajectory, including end-of-life (EOL) goals, can help guide treatment decisions.

 Communication between the health&shy;care team and oncology patients can increase the likelihood that patients receive treatment aligned with their own 

 Accurate assessment is an important aspect of ensuring goals of care align with treatment.

 a team of researchers at Frances Payne Bolton School of Nursing, Case Western Reserve University, sought to exam&shy;ine whether there were differences in resource use at EOL between patients with advanced cancer who identified goals of care focused heavily upon survival versus those who identified goals of care heavily focused on quality of life (QOL). The larger study used a longitudinal descriptive study design and collected data on patients with a diagno&shy;sis of stage 4 gastrointestinal or lung cancers. Data were collected at University Hospitals Seidman Cancer Center in Cleveland, Ohio, every 3 months until the end of the 15-month study period or patient death. Subjects were asked at each time point, “Regarding your care, what is most important to you right now?” (

). Anchors on the 100-point visual analog scale were QOL and survival, with a value of 50 indicating a goal with equal weight given to both domains. Values greater than 50 indicated a goal of care that focused more on survival than QOL. The goals of care data reported here were obtained closest to the sub&shy;ject’s death date.

In this sample of 168 patients with advanced cancer who died during the 15-month study period, the majority of the sample were Caucasian (69.0%) and female (51.8%) and had a diagnosis of gastrointestinal cancer (66.1%), an ECOG performance score of 1 (64.9%), and a mean age of 63.9 (SD = 10.4). Prior to death, 62.9% had an advance directive, 54.2% had received palliative care, and 47.6% had received hospice services. Within 30 days prior to death, 45.5% of the sample had at least 1 visit to the emergency department and 58.1% had at least 1 hospital&shy;ization (with 19% of those being admitted to an intensive care unit).

To further examine how the patients’ goals of care were associated with resource use at EOL, we focused on data in the tails of the goals-of-care scale. We compared resource use between those falling in the group more focused on survival with those more focused on QOL. Those focused more on QOL were more likely to enroll in hospice. All other resource use comparisons (emergency department visits, hospitaliza&shy;tions, intensive care, and palliative care) were not statisti&shy;cally significant. We found that by asking patients a sim&shy;ple question regarding their goals of care, we could assess whether they wanted care that was focused more on survival or QOL. In addition, we found that those who favored goals of care emphasizing QOL had EOL care that was consistent with this goal.

Oncology nurses are in a unique position to talk with patients regarding their goals of care.

 Since the establish&shy;ment of the End-of-Life Nursing Education Consortium in 2000, a collaboration between the American Association of Colleges of Nursing and City of Hope, Duarte, California, to improve palliative care nationwide, momentum has been building to create programs that train nurses to initiate these kinds of discussions with patients. This type of open com&shy;munication can ensure that patient information regarding goals of care is communicated to the healthcare team and, as a result, enhance the likelihood that the patient receives EOL care consistent with their own goals.

You JJ, Fowler RA, Heyland DK; Canadian Researchers at the End of Life Network (CARENET). Just ask: Discussing goals of care with patients in hospital with serious illness. 

. 2014;186(6):425-432. doi:10.1503/ cmaj.121274.

Balogh EP, Ganz PA, Murphy SB, Nass SJ, Ferrell BR, Stovall E. Patient-centered cancer treatment planning: Improving the quality of oncology care. Summary of an Institute of Medicine Workshop. 

2011;16(12):1800-1805. doi:10.1634/theoncologist.2011-0252.

Wittenberg E, Ferrell B, Goldsmith J, Buller H, Neiman T. Nurse communication about goals of care. 

Lipson AR, Douglas SL. Factors influencing care decisions for patients with advanced cancer. 

Researchers exam&shy;ined whether there were differences in resource use at end of life between patients with advanced cancer who identified goals of care focused heavily upon survival versus those who identified goals of care heavily focused on quality of life.

Impact of Goals of Care on Resource Use at End of Life

Amy R. Lipson, PhD, is a Research Associate, and Sara L. Douglas, PhD, RN is Associate Professor and Assistant Dean for Research, at the Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, Ohio.

A new study funded by the National Institutes of Health (NRO14856), “Factors Influencing Cancer Care Decisions,” is currently underway at the Frances Payne Bolton (FPB) School of Nursing at Case Western Reserve University (CWRU) and the Seidman Cancer Center at Case Medical Center. The study focuses on the complex practice of shared decision-making in advanced cancer patients.

Prior research has focused on the examination of healthcare communication with patients or families, or providing more education to patients or families regarding end-of-life treatment decisions.  Results from those studies have shown very mixed results, however. 

This research team believes aggressiveness of care decisions that are made at end-of-life (EOL) are influenced by many factors, including healthcare providers, patients, and family—and these factors are very complex in the way that they influence aggressiveness of care decisions.   

The team, headed by FPB Associate Professor Sara L. Douglas, PhD, RN, is looking at the dyadic processes between oncologist and patient and the influences of the family caregiver and nurse on decision making. Clinical decisions are most often shared, with oncologists providing information and guidance about options and patients evaluating and choosing among the options. In addition to Douglas, the research team includes Barbara J. Daly, PhD, and Christopher J. Burant, PhD, both of the FPB School of Nursing, and Neal Meropol, MD, from the School of Medicine, Case Western Reserve University.

Many patients are influenced in their decisions by family caregiver, oncologist and/or RN evaluations of the appropriate focus of care. Thus, the phenomenon of “decision” is incompletely examined if only one component of the decision-making process is considered and measured independently of the others. This study is designed to help describe the complex nature of the decision-making process involved in EOL treatment for these vulnerable patients. 

Identifying a model that predicts the utilization of aggressive EOL care is an important purpose of this study. The model will incorporate the focus of care (from the perspective of the oncologist, patient, and the oncologist—patient dyad), as well as clinical triggers, EOL preferences, treatment effectiveness, and evaluation of the focus of care (from the perspectives of the caregiver and the RN). 

The researchers hope that examining dyadic relationships between oncologists and patients over time will enable them to describe key aspects that influence EOL treatment decision making. In addition, by including the influence of caregivers and RNs on EOL decision making, the researchers hope to be able to examine factors external to the patient—oncologist dyad.

The study is using a longitudinal, descriptive, correlational design and is recruiting patients with stage IV gastrointestinal or lung cancers. If the patient has a caregiver, that individual is being recruited to participate as well. Baseline data regarding EOL values, religiosity, and optimism are gathered on patients and their caregivers.

Healthcare providers are asked (at baseline) to answer questions related to their own personal EOL values, their comfort with caring for dying patients, and their sense of religiosity. Every 3 months, patients, caregivers, oncologists, and nurses are asked to evaluate treatment effectiveness, their focus of care, the patient’s health-related quality of life, and for oncologists, their predicted survival for the patient. 

We anticipate a sample size of 300 patients, 60% of whom will have caregivers enrolled in the study. There is growing concern that patterns of overly aggressive interventions in the final weeks and months of life seriously detract from quality of life and may not be consistent with patient preferences and values. We believe that it is essential to apply more comprehensive and sophisticated designs in order to be able to identify and implement interventions or decision support systems that can be tailored in such a way as to account for the complex interaction among factors.

Our analysis is expected to yield information that will help us to develop tailored, meaningful interventions that are more likely to be successful in facilitating communication and decision making for those involved in EOL decision for patients with advanced cancer, and we look forward to sharing our findings with at the conclusion of the study.

A new study funded by the National Institutes of Health (NRO14856), "Factors Influencing Cancer Care Decisions," is currently underway at the Frances Payne Bolton (FPB) School of Nursing at Case Western Reserve University (CWRU) and the Seidman Cancer Center at Case Medical Center. The study focuses on the complex practice of shared decision-making in advanced cancer patients.

Factors Influencing Care Decisions for Patients With Advanced Cancer

Registries, large databases of patient information collected in a systematic, standardized fashion, most often focus on biologic measures, such as pathology, radiology, and laboratory results, to track incidence and prevalence of disease as well as causative factors. They also provide data for large-scale observations and measurement of outcomes of prevention, treatment, and measures of quality of care. Currently, the National Program of Cancer Registries collects data on cancer cases occurring among 96% of the US population.

	A nurse-initiated psychosocial cancer registry can provide insight about quality of life (QOL) in patients with cancer.

 Evidence about QOL, as perceived by the patient, is a concern of all clinicians but is of particular importance to the bedside nurse. There has been a great deal of study of QOL of cancer patients; however, most of these reports focus on narrow or limited samples and typically one specific cancer type. Having access to a registry that enrolled patients with diverse cancer types and collected QOL data could be very useful to practicing nurses.

	Before deciding to use a registry, it is important to know the characteristics of the patients enrolled. Data for our registry were collected in an outpatient clinic at an NCI-designed Comprehensive Cancer Center and included all cancer diagnoses and stages. Among the inclusion criteria were >18 years of age, ability to comprehend the English language, having a new diagnosis of cancer, and receiving ongoing care at the cancer center. Exclusion criteria were cognitive impairment or immediate referral for a bone marrow/ stem cell transplant, because much of this type of treatment is conducted in the inpatient setting.

	Demographic and clinical data were gathered at enrollment, and QOL was measured using several questionnaires administered at enrollment, 3 months, and 9 months.

	Patient demographic data included education level, employment status, and income. Cancer demographics were gathered for tumor type and staging and for the patient’s history of cancer and ECOG performance status.

	The project was approved by the hospital’s Institutional Review Board. Of the 410 participants in this registry, the majority were married (64%), Caucasian (76%), and female (57%); the mean age was 59.6 (range, 18-90 years).

	Several instruments were used in this registry to capture data about various aspects of QOL, including mood state, functional status, and spiritual well-being (

). Measuring several dimensions of QOL is important in designing a registry so that it can serve a variety of purposes. For example, when planning to initiate or improve supportive care services by increasing access to palliative care or changing social services staffing,it would be useful to know if services should be targeted to patients with particular demographic or clinical characteristics.

			Table 1.Second-Generation Proteasome Inhibitors

						Eastern Cooperative Oncology Group (ECOG)

						Functional Assessment of Cancer Therapy-General Scale (FACT-G)

						Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being Scale (FACIT-Sp)

Registries, large databases of patient information collected in a systematic, standardized fashion, most often focus on biologic measures, such as pathology, radiology, and laboratory results, to track incidence and prevalence of disease as well as causative factors.

Amy R. Lipson, PhD

Articles

Caregivers' Mental Health Varies by Gender

Impact of Goals of Care on Resource Use at End of Life

Factors Influencing Care Decisions for Patients With Advanced Cancer

The Benefits for Nurses of Using Psychosocial Cancer Registry Data