Likely to Be Effective

Palliative Care

for Caregiver Strain and Burden

Palliative care is the provision of service with an approach that is aimed at improving quality of life of patients and families through prevention and relief of suffering from physical, psychosocial, and spiritual distress. Palliative care, as used here, refers to ongoing patient management by healthcare providers who have expertise in this approach. Palliative care may be provided by interdisciplinary teams who work together to provide a holistic set of interventions to integrate the physical, psychosocial, and spiritual aspects of care.  

Systematic Review/Meta-Analysis

Gomes, B., Calanzani, N., Curiale, V., McCrone, P., & Higginson, I.J. (2013). Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database of Systematic Reviews, 6, CD007760.

Purpose

STUDY PURPOSE: To review the evidence regarding effectiveness of home palliative care services for patients and their caregivers

TYPE OF STUDY: Meta-analysis and systematic review

Search Strategy

DATABASES USED: 12 electronice databases were searched up to November 2012—Cochrane Central Register of Controlled Trials (CENTRAL); EMBASE; MEDLINE; Cochrane Pain, Palliative, and Supportive Care (PaPaS) Trials Register; Cochrane Effective Practice and Organisation of Care (EPOC) Trials Register; CINAHL; EURONHEED; PsycINFO; Cochrane Database of Systematic Reviews (CDSR); Database of Abstracts of Reviews of Effectiveness (DARE); Health Technology Assessment (HTA) Database; and NHS Economic Evaluation Database (NHS EED)

KEYWORDS: An extensive listing of search strategies is provided.

INCLUSION CRITERIA: Randomized controlled trials, time series, and pre-post trials; patients older than 18 years and/or their caregivers

EXCLUSION CRITERIA: Services provided in settings other than the home

Literature Evaluated

TOTAL REFERENCES RETRIEVED = 7,594
 
EVALUATION METHOD AND COMMENTS ON LITERATURE USED: Used the method outlined for Cochrane systematic reviews

Sample Characteristics

  • FINAL NUMBER STUDIES INCLUDED = 23 (7 included in meta-analysis and 6 included in cost analysis)
  • SAMPLE RANGE ACROSS STUDIES: 42–747 in prospective studies; also included large analysis of retrospective data
  • KEY SAMPLE CHARACTERISTICS: Advanced disease including noncancer and cancer

Phase of Care and Clinical Applications

PHASE OF CARE: End-of-life care

APPLICATIONS: Palliative care

Results

Palliative care services provision results in statistically significant increased odds of dying at home (OR 2.21, p = .0003) and a significant but small reduction in patients’ symptom burden. Regarding effects for informal caregivers, evidence of the impact on caregiver physical outcomes was conflicting. Evidence was inconclusive regarding effect on caregiver psychosocial outcomes. Evidence regarding effects on caregiver burden was conflicting. Evidence regarding effects on caregiver severity of grief and satisfaction with care was conflicting. In two studies that examined the addition of specialized caregiver support to usual palliative care services, results showed an increase in caregivers who felt rewards from caregiving. Six studies reported decreased costs in intervention groups, but this was only significant in one study and significance was not analyzed in three.

Conclusions

Strong evidence suggests that home palliative care services increase the likelihood of patients dying at home and decrease symptom burden for patients. Evidence regarding effects for caregivers is conflicting and inconclusive. Evidence regarding cost and cost-effectiveness is insufficient to draw conclusions.

Limitations

  • Most studies were old, and most were done in high-income countries.  
  • Most studies had methodologic flaws and relatively high risk of bias.

Nursing Implications

Findings provide strong evidence that home palliative care services result in increased deaths at home and reduced symptom burden for patients. The effect for informal caregivers is uncertain. Caregiver burden can be higher in situations with more patient symptoms to manage, so one could expect that reducing patient symptom burden could have some benefit for the caregiver.

Print

Kavalieratos, D., Corbelli, J., Zhang, D., Dionne-Odom, J.N., Ernecoff, N.C., Hanmer, J., . . . Schenker, Y. (2016). Association between palliative care and patient and caregiver outcomes: A systematic review and meta-analysis. JAMA, 316, 2104–2114. 

Purpose

STUDY PURPOSE: To complete a systematic review of palliative care interventions in randomized, controlled trials (RCTs) involving adults with life-limiting illness and meta-analysis to identify the relationship of those intervention with quality of life, symptom burden, and survival of those adults and their caregivers

TYPE OF STUDY: Systematic review of palliative care RCTs

Search Strategy

DATABASES USED: MEDLINE, EMBASE, CINAHL, and CENTRAL (inception to 2016)
 
ARTICLE TOPIC INCLUSION CRITERIA: Adults aged 18 years or older with a life-threatening illness diagnosis; patient report of a minimum of one of nine patient-level outcomes: mood, advance care planning, place of death, survival, use of resources, healthcare expenditures, care satisfaction, symptom burden, or quality of life (QOL). Interventions included at least two of eight possible domains of palliative care defined by the National Consensus Project for Quality Palliative Care. The systematic review included RCTs that featured usual care, waitlist, or attention control comparisons.
 
ARTICLE TOPIC EXCLUSION CRITERIA: Pediatrics, non–English-language, single symptom interventions (e.g., opioids for dyspnea), focus on only one palliative care domain (e.g., advance care planning only), non-focus on patients with life-threatening illness, caregiver-only intervention
 
Most of meta-analysis trials (72%) occurred in the United States and in ambulatory (32.5%) or home settings (41.8%). Forty-two trials reported subjective outcomes (those reported by patients), but over half were deemed high risk for bias or unclear bias (total of 81.4%). Of the 43 trials, 32 reported objective (survival) outcomes, but over 67% were deemed as high risk or unclear risk of bias. Trial interventions focused on a median of five interventions related to eight palliative care dimensions. Forty-two trials delineated physical dimensions of care, whereas 39 focused on psychological care, although no trial explicitly addressed cultural influences on interventions. Of 15 trial interventions evaluating caregiver outcomes, only five collected caregiver data only without an explicit intervention for caregivers. A variety of research designs existed in studies used for the meta-analysis. 
 
 
 

Literature Evaluated

TOTAL REFERENCES RETRIEVED: 6,158
 
EVALUATION METHOD AND COMMENTS ON LITERATURE USED: Conduct of the systematic review and meta-analysis occurred in concordance with the Cochrane Handbook for Systematic Reviews of Interventions. Articles met inclusion criteria from four database searches (inception to 2016). To evaluate the quality of studies in the systematic review, two reviewers independently evaluated each study for meeting inclusion criteria. If two reviewers’ evaluations varied, two different authors collaborated with the initial two reviewers to reach consensus. In addition, two of the four authors reviewed each trial according to a systematic and customized form to elicit information from study primary and secondary reports. Two investigators independently rated study risk of bias using the Cochrane Collaboration tool. A narrative synthesis included all trials (N = 43, 30 of patients with cancer) and considered quality of life, survival outcomes, and symptom burden premeta-analysis. Various statistical techniques controlled for trial heterogeneity, variation in study endpoint times, influence of study risk, intervention strength, study setting, and patient disease that may have influenced meta-analysis results and outcome measurement of patient symptom burden, survival, and quality of life, and their influence on caregivers.

Sample Characteristics

  • FINAL NUMBER STUDIES INCLUDED = 56 (30 with cancer)
  • TOTAL PATIENTS INCLUDED IN REVIEW = 12,731 patients, 2,479 caregivers 
  • SAMPLE RANGE ACROSS STUDIES: The mean patient age was 67 years; no caregiver age data were available. Sample sizes ranged from 27–434 participants.
  • KEY SAMPLE CHARACTERISTICS: All patients had life-limiting illnesses. Patients were in hospital, home, and ambulatory settings. Subjective outcomes: Half of reviewed trials had a high level of bias (55.8%), and 16% had a low level of bias; the rest was unknown. Objective outcomes: 44% had a high level of bias, and 6.9% had a low level of bias; the rest was unknown or not measured. Study interventions included physical and psychological aspects of care, with cultural sensitivity underused and underrepresented. Interventions addressed a median of five of eight palliative care components.

Phase of Care and Clinical Applications

PHASE OF CARE: Active cancer care
 
APPLICATIONS: Palliative care

Results

The reviewers looked at nine domains: patient quality of life, physical symptoms, survival, patient mood, advanced care planning, site of death, resource utilization and expenditures, satisfaction with care, and caregiver outcomes resulting from patient symptom burden, survival, and quality of life. Patient quality of life was assessed in 24 studies (4,576 patients). Twelve of those studies had high risk of bias and seven were low risk of bias (five were unknown). Of the seven low-risk-of-bias studies, five reported improved quality of life. In fifteen trials, quality of care was associated with a statistically significant improvement in quality of life. High bias and heterogeneity were significant issues in the analysis. Physical symptoms were reviewed in 29 trials (10,105 people). Seventeen of 29 trials looked at physical symptoms. Of the seven that were low risk bias, after sensitivity analyses, palliative care was not associated with change in symptom burden in four trials at the 1- to 3-month follow-up because of heterogeneity. The reviewers went on to describe that, because of high risk of bias and heterogeneity, no association existed between palliative care and improved survival, patient mood, advanced care planning, site of death, and resource use.

Conclusions

In this review, the evidence suggests that palliative care intervention improves symptom burden and patient quality of life in those who have been diagnosed with an advanced cancer or with a serious illness. The review was not able to establish if palliative care improved caregiver quality of life. Significant issues existed with assessing the association of palliative care with quality of life, symptom burden, and adult survival because of the problematic quality and rigor of RCTs used in the systematic review and meta-analysis.

Limitations

  • Mostly low quality/high risk of bias studies
  • High heterogeneity
  • The authors reported multiple limitations of this review, including the wide spectrum and diversity in palliative care interventions. This diversity contributed to heterogeneity to the meta-analysis. Missing data, the exclusion of quasiexperimental studies, and trial statistical analysis may have contributed to underpowered studies in the meta-analysis. Across trials, clinical trial data were not uniformly reported, and information about points in time when patient and caregiver may have received palliative care was lacking. The risk of study bias (a subjective interpretation) and use of the Cochrane Risk of Bias tool may not have defined specifics of behavioral interventions found in many of the trial studies used in the meta-analysis and systematic review.
  • No specific information provided on evaluation rating forms
  • No caregiver-only studies included in meta-analysis to measure caregiver outcomes
  • No trial focused on influence of culture on intervention assessment or effect.

Nursing Implications

Multiple RCTs have established that palliative care improves patient experience and quality of care. Insufficient evidence exists to assess whether that is true for patient and caregiver dyads or for caregivers assessed separately from patients. More studies reflecting methodological rigor, cultural sensitivity, and quality to identify aspects of effective palliative care for both patients and caregivers remain a priority.

Print

Research Evidence Summaries

Dionne-Odom, J.N., Azuero, A., Lyons, K.D., Hull, J.G., Tosteson, T., Li, Z., . . . Bakitas, M.A. (2015). Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: Outcomes from the ENABLE III randomized controlled trial. Journal of Clinical Oncology, 33, 1446–1452. 

Study Purpose

To assess the impact of early versus delayed (three months after patient diagnosis) initiation of palliative care for patients with advanced cancer on rural informal caregivers’ quality of life, burden (objective, demand, and stress), and depression

Intervention Characteristics/Basic Study Process

Caregivers were assigned to a palliative care intervention immediately following random assignment to groups (early or delayed) or three months after assignment. The telephone-based intervention, informed by authors’ earlier work sensitive to rural access issues, involved conversations between trained advanced practice palliative care nurse coaches and caregivers. Each coach provided three evidence-based content sessions delivered weekly in a scripted format. Each patient received a different coach than the family caregiver to support the open sharing of feelings about the caregiving experience. Coaches contacted their assigned caregivers on the telephone at least monthly to respond to emerging issues until patient death. Coaches encouraged caregivers to participate in patient palliative care consultations if acceptable to patient and called a caregivers when their family members died. All nurse coaches met weekly with study's primary investigator to support study integrity. To identify group differences on desired outcome measures, all caregivers completed three questionnaires at baseline and every six weeks until week 24.

Sample Characteristics

  • N = 122  
  • MEAN AGE = 60 years
  • MALES: 21.3%, FEMALES: 78.7%
  • KEY DISEASE CHARACTERISTICS: Patients' predominant diagnosis was advanced gastrointestinal or lung cancer  
  • OTHER KEY SAMPLE CHARACTERISTICS: 93% white; 80% completed high school or college; more than half employed; 29% retired; 62% professed Catholic or Protestant religious beliefs; 75% were the spouse or partner of a patient with cancer 

Setting

  • SITE: Multi-site  
  • SETTING TYPE: Outpatient    
  • LOCATION: New Hampshire and Vermont

Phase of Care and Clinical Applications

  • PHASE OF CARE: End-of-life care
  • APPLICATIONS: Palliative care 

Study Design

Randomized, controlled trials with a wait-control design

Measurement Instruments/Methods

  • Caregiver Quality of Life Scale: Cancer (CQOL-C0)
  • Center for Epidemiologic Studies Depression (CESD) Scale
  • Montgomery Borgatta Caregiver Burden (MBCB) Scale
  • High reliability and validity assessment indices provided by authors

Results

More than 30% of participants did not complete all the follow-up assessments although the authors used appropriate statistics to confirm there was no significant relationship of attrition and measured characteristics of caregivers. The early intervention group showed a decline in depression scores from baseline compared to the delayed group (d –0.32, p = 0.02). There were no differences between the groups in quality of life or burden scores. Among the caregivers of patients who died, results for depression (p = 0.02) and stress burden (p = 0.01) were better in the early intervention group. All measures showed decline somewhat in both groups.

Conclusions

Study data support that well-educated, white, female caregivers experience improved quality of life, less depression, and less burden with early involvement in palliative care programs distinct from similar patient programs. More studies of minority populations, male caregivers, and low literacy populations receiving similar programs could increase the generalizability of the current study's findings.

Limitations

  • Findings not generalizable
  • Subject withdrawals ≥ 10%
  • Other limitations/explanation: No inclusion criteria for caregivers except those caring for patients who met certain criteria (potential selection bias); sample mainly white with high school or more education levels living in close geographical distance to affect generalizability of results; 32% of caregivers did not complete all assessments (authors do not note rationale, seems patients became more ill and needed caregiver assistance); caregiver exclusion criteria did not clarify if a caregiver was excluded if he or she had cancer, a diagnosis of depression, or health issues that affected quality of life or perceived burden

Nursing Implications

Nursing knowledge and the clinical competency of support provision for early palliative care programs to family caregivers and patients challenged by end-of-life issues is important. The American Nurses Association Code for Nurses supports the ethical responsibility of nurses to ensure that both groups receive evidence-based programs tailored to patients and caregiver groups to meet current healthcare goals for person-centered care.

Print

El-Jawahri, A., Greer, J.A., Pirl, W.F., Park, E.R., Jackson, V.A., Back, A.L., . . . Temel, J.S. (2017). Effects of early integrated palliative care on caregivers of patients with lung and gastrointestinal cancer: A randomized clinical trial. The Oncologist, 22, 1528–1534.

Study Purpose

To test the effects of early integrated palliative care ([PC] plus oncology care) versus oncology care on caregivers’ distress and quality of life (QOL).

Intervention Characteristics/Basic Study Process

Patients in the intervention group met within the first four weeks of diagnosis with a PC-certified MD or APN and at least once monthly until the patient died; PC providers had the ability to contact patients in the intervention group by phone if an in-person visit was not possible, they also added more visits as needed. The PC visits focused on interventions with patients that were discussed in a different study that was referred to. Caregivers were not required to attend the PC visits but were encouraged to. Seventy-one percent of PC visits were attended by caregivers.

Sample Characteristics

  • N = 275   
  • AGE: Mean = 57 years (SD = 13.6)
  • MALES: 31%  
  • FEMALES: 69%
  • CURRENT TREATMENT: Not applicable, other
  • KEY DISEASE CHARACTERISTICS: Incurable lung cancers or noncolorectal gastrointerstinal cancers
  • OTHER KEY SAMPLE CHARACTERISTICS: Caregivers were 18 years and older, mostly White, Catholic, married to the patient, with a college education. Able to respond in English with minimal use of translator (minimal use not defined)

Setting

  • SITE: Single site   
  • SETTING TYPE: Outpatient; if patient were admitted to Massachusetts General Hospital, the PC team followed them during hospitalization
  • LOCATION: Massachusetts General Hospital

Phase of Care and Clinical Applications

  • PHASE OF CARE: End-of-life care
  • APPLICATIONS: Palliative care

Study Design

Randomized nonblinded clinical trial. Randomization using 1:1 stratified by cancer type. Researchers/clinicians learned of assignment after it was done by the Office of Data Quality staff.

Measurement Instruments/Methods

Caregiver mood and anxiety were assessed using the Hospital Anxiety and Depression Scale (HADS); the QOL was assessed using SF-36. Measurement of outcomes occurred at week 12 and week 24 post-enrollment.

Results

At 12 weeks, caregivers in the intervention group has significantly lower total psychological distress (anxiety and mood) assessed by HADS total scale score (adjusted mean difference = -1.45, 95 CI [-2.76, -0.15], p = 0.029; the difference seems to be driven by the lower depression scores on the subscale level (adjusted mean difference = -0.71, 95% CI [-1.38, -0.05], p = 0.036). At 24 months, no significant differences between the two groups for any of the outcomes (total psychological distress, depression, anxiety, and QOL). Using terminal decline model (which factors in missing data and deterioration in caregivers outcomes closer to death), caregivers in the interventions group has significantly lower HADs-total (and lower scores on the subscales, depression and anxiety) (95% CI [4.11, 9.58]). No differences in QOL still under this model between the two groups of caregivers.

Conclusions

Early Integrated PC to patients with incurable cancer decreases their caregivers' psychological distress (anxiety and depression) but not QOL.

Limitations

  • Risk of bias (no blinding)
  • Unintended interventions or applicable interventions not described that would influence results
  • Intervention expensive, impractical, or training needs
  • Questionable protocol fidelity
  • Other limitations/explanation: The nature of the PC visits and what they involved were not described in the article. Authors referred reader to a previous research report. The fact that the number of PC visits may have varied widely between patients in the intervention group, calls to question if the frequency, not only the visit, affected the outcomes.

Nursing Implications

This was a compelling study for early palliative care--educating patients and their caregivers about benefits of early PC and addressing that the benefits extend beyond patients.

Print

McDonald, J., Swami, N., Hannon, B., Lo, C., Pope, A., Oza, A., . . . Zimmermann, C. (2016). Impact of early palliative care on caregivers of patients with advanced cancer: Cluster randomised trial. Annals of Oncology, 28, 163–168. 

Study Purpose

To report the effect of an early palliative care intervention on quality of life (QOL) and satisfaction with care of caregivers of patients with advanced cancer

Intervention Characteristics/Basic Study Process

A cluster randomization process involving patients and their caregivers in 24 Canadian medical oncology clinics supported two randomized arms: an intervention with early palliative care team referral or usual oncology care with palliative care only as needed. Further stratification of clinics by tumor site supported the two study arms. Both arms included caregivers of patients with advanced cancer, defined as having a clinical prognosis of 6–24 months and an ECOG score of 0–2, who completed previously validated instruments on care satisfaction (FAMCARE-19) and QOL (SF-36v2 Health Survey, Caregiver Quality of Life Index-Cancer [CQOL-C]). A mixed effect model evaluated intervention group improvement over the control group at baseline assessment and monthly for as many as four months.

Sample Characteristics

  • N = 182, 94 in intervention and 88 in control
  • MEDIAN AGE = 58 years (intervention), 57 years (control) 
  • MALES: 35% (not specifically stated, extrapolated from female percentage), FEMALES: 65% 
  • CURRENT TREATMENT: Not specified
  • KEY DISEASE CHARACTERISTICS: Stage III with poor prognosis or stage IV disease (hormone refractory disease of breast and prostate cancer); cancer diagnoses included lung, gastrointestinal, genitourinary, breast, and gynecologic.
  • OTHER KEY SAMPLE CHARACTERISTICS: Patients with an ECOG status of 0–2 and who passed a cognitive screening (Short Orientation-Memory-Concentration Test, greater than 20 or less than 10 errors)

Setting

  • SITE: Palliative care clinic
  • SETTING TYPE: Outpatient oncology clinics
  • LOCATION: Princess Margaret Cancer Centre, Toronto, Canada

Phase of Care and Clinical Applications

  • PHASE OF CARE: Advanced cancer diagnosis (prognosis of 6–24 months)
  • APPLICATIONS: Palliative care

Study Design

Cluster randomized trial design

Measurement Instruments/Methods

  • Satisfaction in care: 19-item FAMCARE Scale (FAMCARE-19) 
  • QOL measurements: SF-36v2 Health Survey, CQOL-C

Results

Analysis of FAMCARE-19 (satisfaction with care) data showed significant improvement in the intervention group over the control group during the trial period (three months: p = 0.007, four months: p = 0.02). FAMCARE-19 scores were not significantly associated with the number of caregiver palliative clinic visits (three months: p = 0.21, four months: p = 0.39). The intervention and control groups did not differ significantly during the study time on SF-36 physical component scores, the SF-36 mental component scores, and CQOL-C scores. Despite improvements in early palliative care team referral group satisfaction with care, the authors were unable to conclude whether such care improved that caregiver group’s QOL. An exploratory analysis of FAMCARE-19 domains showed that the group’s greatest improvement over that of the usual care group was in four areas: depth of doctor’s patient symptom assessment (p = 0.004), family knowledge of patient tests (p = 0.02), specialist referral (p = 0.02), and family access to nursing services (p = 0.01).

Conclusions

Canadian caregivers of patients with advanced cancer that receive early palliative care team intervention experience increased satisfaction with care compared to those who receive standard oncology care. Additional work to explore the impact of an early palliative care team intervention on caregiver QOL with an attention on factors like sample size and contextual factors of care will contribute to the science in this area.

Limitations

  • Risk of bias (no blinding) (no full blinding due to cluster design
  • Risk of bias (sample characteristics)
  • Measurement/methods not well described
  • Subject withdrawals ≥ 10%  (17% attrition after baseline assessment)
  • Recruitment from a single cancer center
  • The intervention was complex, and no measurement of dosage of ancillary interventions, which included qualitative interviews, was included.

Nursing Implications

Few clinical trials assess the effect of early palliative care interventions on caregivers of patients with advanced cancer. Current standards of care for patients with advanced cancer include integrating palliative care to improve patient care satisfaction and QOL. This study shows evidence that including those patient caregivers in such an approach improves their satisfaction with care, although it is unclear whether it improves their overall QOL.

Print

O'Hara, R.E., Hull, J.G., Lyons, K.D., Bakitas, M., Hegel, M.T., Li, Z., & Ahles, T.A. (2010). Impact on caregiver burden of a patient-focused palliative care intervention for patients with advanced cancer. Palliative and Supportive Care, 8, 395–404. 

Study Purpose

To assess whether a previously supported patient-directed palliative care intervention would decrease caregiver burden

Intervention Characteristics/Basic Study Process

Patients received a random assignment to either an intervention (palliative care) or usual care group. Intervention patients participated in four weekly telephone sessions focused on communicating with healthcare providers, learning problem-solving skills, managing disease symptoms, and planning for end-of-life care. Patient caregivers received invitations and volunteered to participate in the intervention. Following the intervention, nurses called patients at least once a month to lend support and present additional information. Patients in the usual care group received standard oncology care at the cancer care center. Caregivers and patients completed questionnaires at baseline, one month post-baseline, and every three months until the end of the study. Following patient death during the study period, caregivers were asked to complete the After-Death Bereaved Family Member Interview (ADI).

Sample Characteristics

  • N = 198   
  • MEAN AGE = 59 years
  • MALES: 23%, FEMALES: 77%
  • CURRENT TREATMENT: Other
  • KEY DISEASE CHARACTERISTICS: Patients with advanced cancer receiving outpatient palliative care 
  • OTHER KEY SAMPLE CHARACTERISTICS: Intervention caregivers were significantly more educated than those in usual care group.

Setting

  • SITE: Multi-site   
  • SETTING TYPE: Outpatient    
  • LOCATION: U.S. comprehensive cancer centers in northern New England

Phase of Care and Clinical Applications

  • PHASE OF CARE: End-of-life care
  • APPLICATIONS: Palliative care

Study Design

Randomized, controlled trial

Measurement Instruments/Methods

  • Caregiver burden: 14-item Montgomery Borgatta Caregiver Burden Scale to measure objective burden, stress burden, and demand burden
  • Quality of care: 67-item After-Death Bereaved Family Member Interview (ADI) to measure caregiver perception of patient quality of care four to six months after patient death
  • Patient quality of life: 46-item Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) to measure patient overall end-of-life well-being
  • Physical symptoms: 10-item Edmonton Symptom Assessment Scale (ESAS) to measure patient symptom severity
  • Depressed mood: 20-item Center for Epidemiological Studies-Depression (CES-D) to measure patient and caregiver depression frequency

Results

Patient FACIT-Pal scores correlated negatively and at high levels with ESAS scores and CES-D scores, and ESAS and CES-D scores correlated positively. Fewer and less consistent correlation of caregiver burden scores occurred: caregivers perceiving objective burden sources reported stress but not demand burden (unreasonable patient requests for care). Demand burden was positively correlated with stress burden in caregivers. Patients who identified lower patient quality of life (FACIT-Pal) had caregivers scoring higher on objective and stress burden. Caregivers scored higher on objective burden and stress burden if patients had higher ESAS and CES-D scores (latter evident one month postbaseline). Of 96 caregiver burden correlations, patient well-being, and quality of care, five achieved statistical significance. These included patient spiritual and emotional support concerns associated with patient well-being (p < 0.01) and decreased caregiver stress burden (p < 0.01) at baseline. One month postbaseline, unmet patient needs correlated with caregiver stress burden (p < 0.05), and concerns with patient respectful treatment correlated with increased caregiver demand burden (p < 0.05).

Conclusions

Despite evidence in a previous ENABLE II study supporting the success of a palliative care interventions to decrease patient symptom intensity, depression, and improve quality of life, this study did not support improvement in caregiver burden with a similar methodology.

Limitations

  • Risk of bias (sample characteristics)
  • Unintended interventions or applicable interventions not described that would influence results
  • Findings not generalizable (96% Caucasian , 77% female, and 84% married or living with partner)
  • Subject withdrawals ≥ 10% 
  • Caregiver participation in intervention inconsistent to affect study outcomes
  • High caregiver attrition prevented measurements after four months.
  • ADI reports focused on only patients' quality of care, not caregiver experience.

Nursing Implications

Multiple studies document that minimizing caregiver burden requires specialized interventions focusing on emotional, financial, spiritual, and physical strains but also caregiving benefits gained in a dyadic relationship (patient and caregiver). Well-designed long-term randomized, controlled trials sensitive to documented health interaction outcomes of caregiving dyads may provide clinical direction for improved patient well-being and lower caregiver burden during palliative cancer care.

Print

Sun, V., Grant, M., Koczywas, M., Freeman, B., Zachariah, F., Fujinami, R., . . . Del Ferraro, C. (2015). Effectiveness of an interdisciplinary palliative care intervention for family caregivers in lung cancer. Cancer, 121, 3737–3745.

Study Purpose

To test the effectiveness of an overall supportive and psychoeducational care intervention on caregiver quality of life and patient symptoms

Intervention Characteristics/Basic Study Process

A quality of life assessment was conducted at baseline for patients and caregivers. Results were used to develop a palliative care plan that was discussed at weekly meetings by the interdisciplinary care team. Symptom management and supportive care referrals and community resources were identified as needed. Family caregivers also received four educational sessions and a manual of all teaching content. Questionnaires were completed at baseline, 6, and 12 weeks. A comparison usual care group was recruited after the intervention group and had study measures obtained at baseline and at 7 and 12 weeks.

Sample Characteristics

  • N = 354 caregiver and patient pairs   
  • MEAN AGE = 57.3 years
  • MALES: 37.3%, FEMALES: 66.7%
  • KEY DISEASE CHARACTERISTICS: All patients had lung cancer.
  • OTHER KEY SAMPLE CHARACTERISTICS: Of the patients, 15.3% were Asian, 4.5% were Black, and 6.7% were Hispanic or Latino. About one-third were employed.

Setting

  • SITE: Single site   
  • SETTING TYPE: Outpatient    
  • LOCATION: Southern California

Phase of Care and Clinical Applications

PHASE OF CARE: Late effects and survivorship

Study Design

Prospective, nonrandomized, parallel-group trial

Measurement Instruments/Methods

  • City of Hope quality of life tool
  • Montgomery Borgotta Caregiver Burden Scale
  • Preparedness for Caregiving Scale
  • Functional Assessment of Cancer Therapy-Lung (FACT-L) for patient quality of life and symptoms
  • Functional Assessment of Chronic Illness-Spiritual Well-Being Scale (FACIT-Sp)
  • Distress Thermometer

Results

Caregivers in the experimental group had improved quality of life in the social well-being domain (p < 0.001) and distress (p = 0.01). Caregivers in the intervention group reported less problem with objective burden or life disruption (p < 0.001).

Conclusions

The palliative care intervention provided here was associated with lower caregiver strain and burden in some aspects compared to those who did not receive the intervention.

Limitations

  • Risk of bias (no blinding)
  • Risk of bias (no random assignment) 
  • Risk of bias (no appropriate attentional control condition)
  • Usual care was not fully described.

Nursing Implications

The findings were limited because of study design; however, the findings support the benefit of palliative care for caregivers.

Print