Cancer Support Team and Satisfaction With End-of-Life Care
Cancer Support Team and Satisfaction With End-of-Life Care
The parent study, testing the effect of an interdisciplinary CST, was conducted at two outpatient clinics of Seidman Cancer Center in Cleveland, OH from 2008–2012. Consistent with Donabedian's (1988) framework using structure, process, and outcome, the purpose of the project was to alter the structure of the care delivery system to modify care processes and achieve improved outcomes. The overall sample is described in another article (Daly, Douglas, Gunzler, & Lipson, 2013). In the parent study, 610 patients were enrolled, and 214 (35%) died during the study period. A subsample (i.e., patients who died and their caregivers) of the parent study is included in the analyses described here. Of those who died, 106 had caregivers who participated in the parent study.
Adult patients with newly diagnosed stage III or IV lung, GI, or GYN cancer were screened for eligibility (n = 9,362) during the study period. Of those, 1,233 met eligibility criteria, which also included Eastern Cooperative Oncology Group (ECOG) scores of less than or equal to 3, capacity to provide informed consent, and intention to receive treatment at the cancer center. Patients with stage IIB pancreatic cancer were also considered eligible because their prognoses were similar to stage III lung cancer. Eligible patients were approached at their first or second appointment by a research assistant (RA); the study was explained, and written informed consent was obtained.
The current study used a pre- and post-test design. The control period occurred prior to implementation of the CST, and the experimental period occurred after implementation of the CST. For the first nine months of the study, no intervention was provided, and all participants who were enrolled were in the control group. Data collection occurred at enrollment as well as at 3, 9, and 15 months. When the last control participant was enrolled after 10 months of enrolling participants to the control group, the intervention was introduced at the study site. At that point, all participants subsequently enrolled were experimental participants. Data collection for those participants followed the same pattern as for the control participants; data were collected at enrollment as well as at 3, 9, and 15 months after study enrollment. The protocol, including the consent procedure, was approved by the study site's institutional review board.
Patients and caregivers in the control group received support and care coordination from their usual oncology team, including nurses, doctors, advanced practice nurses, and social workers, during active treatment and follow-up. Patients in the control group had access to support services depending on the assessment of need by the primary oncology team. Services were not protocol-driven and were provided independently by each person rather than as a team. No minimum amount of contact with any of the providers was prescribed, no defined focus existed for care planning, discussion of advance directives, or support measures for patients and families.
Patients and caregivers in the intervention group received support and care coordination from the interdisciplinary CST consistently, integrated in the routine care provided to patients with advanced lung, GI, and GYN cancers. Services were provided in conjunction with active treatment, which included radiation, chemotherapy, and/or surgery. The support service consisted of eight components: (a) baseline assessment of symptoms, distress, and social and spiritual concerns of the patient and primary family caregiver; (b) summary of a plan for supportive services entered in the medical record; (c) ongoing provision of symptom management, education, and psychosocial and spiritual support according to patient need; (d) introduction of advanced care planning discussions as early as possible; (e) a minimum of monthly contacts with the patient in the clinic during treatment or by phone if the patient had no clinic appointments; (f) daily availability to the patient and family caregiver by phone for questions or concerns; (g) regular (monthly or quarterly) meetings with each oncologist on the relevant disease teams to review and coordinate care plans for his or her patients; and (h) referral to and coordination with community providers (e.g., home care, palliative care, hospice) when appropriate.
A member of the CST met each patient and family caregiver on the first or second clinic appointment, explained the purpose of the team (to provide supportive services as an adjunct to their cancer treatment), obtained a detailed history, and performed the baseline assessment. Patients and family caregivers subsequently met and had access to all members of the CST, but the focus and amount of services provided over time (e.g., help with financial concerns, intensive symptom management, spiritual counseling) was determined by patient and caregiver need and varied among patients and over time for individual patients. At minimum, meetings with a member of the CST occurred monthly. Patients and caregivers were encouraged to contact team members at any time with questions. The team reviewed all new patients after admission and met weekly as a team to review active patients and coordinate care plans throughout the 15-month study period, or until the patient died or was transferred to hospice.
Following consent, the RA interviewed the patient and caregiver in the clinic to obtain demographic information and clinical information as well as health-related quality of life (HRQOL), comorbidity, mood state, and social support. For patients, HRQOL was measured using the Functional Assessment of Cancer Therapy–General (FACT-G) tool. This tool has established reliability (a = 0.89) and validity (r = 0.77), with higher scores reflecting better HRQOL (Cella et al., 1995; Schipper, Clinch, McMurray, & Levitt, 1984). Patient comorbidity was measured using the Charlson Comorbidity Index, a tool with established reliability (r = 0.8–0.84) and validity (r = 0.71) (Chaudhry, Jin, & Meltzer; 2005; Mulrow, Gerety, Cornell, Lawrence, & Kanten, 1994). The measures were used for descriptive purposes.
Outcome variables used in this study were the Profile of Mood States (POMS), Medical Outcomes Study Social Support Survey (MOS-SS), and Family Satisfaction With End-of-Life Care (FAMCARE). Caregiver mood state was measured using POMS, where higher scores indicate a higher degree of mood disturbance. This tool has established reliability (a = 0.88–0.94) and moderate discriminant validity (McNair, Lorr, & Droppleman, 1971). The total POMS score captures the mood states of anger, depression, fatigue, tension, and vigor.
Caregiver social support was measured using MOS-SS, with higher scores reflecting more perceived social support. This tool has established reliability (a = 0.93) and validity (factor loadings greater than 0.6) (Mahmud, Awang, & Mohamed, 2004).
Satisfaction with care received at EOL was measured using FAMCARE, which measures the degree to which family members are satisfied with the health care received by the patient and family with respect to four components of care (i.e., information giving, availability of care, psychological care, and physical patient care), with higher scores reflecting more satisfaction with EOL care. The tool has established reliability (a = 0.93) and criterion validity (McCusker Scale of 0.8 and 0.77) (Aoun, Bird, Kristjanson, & Currow, 2010).
Postenrollment data collection points were at 3, 9, and 15 months. A monthly phone call was made by the RA to determine patient status (i.e., survival and location) and resource use (i.e., initiation of home care, placement in a nursing facility, or initiation of hospice services). If a patient died during the 15-month time period, which was the sample used for the current study, the RA scheduled a telephone interview eight weeks after the patient's death for the purpose of administering FAMCARE (Daly, Douglas, O'Toole, et al., 2010).
All analyses were performed using SPSS®, version 20.0. Univariate comparisons of demographic and clinical characteristics of patients and caregivers were performed using one-way analysis of variance (ANOVA) for continuous variables, and chi-square for categorical variables. Hospice length of stay was highly skewed and exhibited kurtosis, and the Mann-Whitney U test was employed and reported. Multiple linear regression analysis was used to examine the impact of group on key outcome variables after controlling for influential variables. Repeated measures ANOVA was conducted to examine changes in POMS and MOS-SS over time. Covariates included variables that were statistically significant in comparison with experimental and control groups (e.g., caregiver gender), as well as variables that were shown to influence burden associated with EOL decision making (e.g., caregiver race) (Braun, Beyth, Ford, & McCullough, 2008; Jenkins, Lapelle, Zapka, & Kurent, 2005; Waters, 2001).
The key outcome variables examined were caregiver mood (POMS), social support (MOS-SS), and the 13 postdeath satisfaction items included in FAMCARE. FAMCARE has 20 items, 7 of which ask about EOL care for patients who died in the hospital. Only eight of the patients included in the analyses died in a hospital setting. Therefore, the sum of the 13 items that applied to EOL care regardless of location of death was used. For all analyses, a two-sided p value of less than 0.05 was considered to be statistically significant.
Methods
Setting and Population
The parent study, testing the effect of an interdisciplinary CST, was conducted at two outpatient clinics of Seidman Cancer Center in Cleveland, OH from 2008–2012. Consistent with Donabedian's (1988) framework using structure, process, and outcome, the purpose of the project was to alter the structure of the care delivery system to modify care processes and achieve improved outcomes. The overall sample is described in another article (Daly, Douglas, Gunzler, & Lipson, 2013). In the parent study, 610 patients were enrolled, and 214 (35%) died during the study period. A subsample (i.e., patients who died and their caregivers) of the parent study is included in the analyses described here. Of those who died, 106 had caregivers who participated in the parent study.
Adult patients with newly diagnosed stage III or IV lung, GI, or GYN cancer were screened for eligibility (n = 9,362) during the study period. Of those, 1,233 met eligibility criteria, which also included Eastern Cooperative Oncology Group (ECOG) scores of less than or equal to 3, capacity to provide informed consent, and intention to receive treatment at the cancer center. Patients with stage IIB pancreatic cancer were also considered eligible because their prognoses were similar to stage III lung cancer. Eligible patients were approached at their first or second appointment by a research assistant (RA); the study was explained, and written informed consent was obtained.
Design
The current study used a pre- and post-test design. The control period occurred prior to implementation of the CST, and the experimental period occurred after implementation of the CST. For the first nine months of the study, no intervention was provided, and all participants who were enrolled were in the control group. Data collection occurred at enrollment as well as at 3, 9, and 15 months. When the last control participant was enrolled after 10 months of enrolling participants to the control group, the intervention was introduced at the study site. At that point, all participants subsequently enrolled were experimental participants. Data collection for those participants followed the same pattern as for the control participants; data were collected at enrollment as well as at 3, 9, and 15 months after study enrollment. The protocol, including the consent procedure, was approved by the study site's institutional review board.
Control Group
Patients and caregivers in the control group received support and care coordination from their usual oncology team, including nurses, doctors, advanced practice nurses, and social workers, during active treatment and follow-up. Patients in the control group had access to support services depending on the assessment of need by the primary oncology team. Services were not protocol-driven and were provided independently by each person rather than as a team. No minimum amount of contact with any of the providers was prescribed, no defined focus existed for care planning, discussion of advance directives, or support measures for patients and families.
Intervention Group With Cancer Support Team
Patients and caregivers in the intervention group received support and care coordination from the interdisciplinary CST consistently, integrated in the routine care provided to patients with advanced lung, GI, and GYN cancers. Services were provided in conjunction with active treatment, which included radiation, chemotherapy, and/or surgery. The support service consisted of eight components: (a) baseline assessment of symptoms, distress, and social and spiritual concerns of the patient and primary family caregiver; (b) summary of a plan for supportive services entered in the medical record; (c) ongoing provision of symptom management, education, and psychosocial and spiritual support according to patient need; (d) introduction of advanced care planning discussions as early as possible; (e) a minimum of monthly contacts with the patient in the clinic during treatment or by phone if the patient had no clinic appointments; (f) daily availability to the patient and family caregiver by phone for questions or concerns; (g) regular (monthly or quarterly) meetings with each oncologist on the relevant disease teams to review and coordinate care plans for his or her patients; and (h) referral to and coordination with community providers (e.g., home care, palliative care, hospice) when appropriate.
A member of the CST met each patient and family caregiver on the first or second clinic appointment, explained the purpose of the team (to provide supportive services as an adjunct to their cancer treatment), obtained a detailed history, and performed the baseline assessment. Patients and family caregivers subsequently met and had access to all members of the CST, but the focus and amount of services provided over time (e.g., help with financial concerns, intensive symptom management, spiritual counseling) was determined by patient and caregiver need and varied among patients and over time for individual patients. At minimum, meetings with a member of the CST occurred monthly. Patients and caregivers were encouraged to contact team members at any time with questions. The team reviewed all new patients after admission and met weekly as a team to review active patients and coordinate care plans throughout the 15-month study period, or until the patient died or was transferred to hospice.
Procedures and Measures
Following consent, the RA interviewed the patient and caregiver in the clinic to obtain demographic information and clinical information as well as health-related quality of life (HRQOL), comorbidity, mood state, and social support. For patients, HRQOL was measured using the Functional Assessment of Cancer Therapy–General (FACT-G) tool. This tool has established reliability (a = 0.89) and validity (r = 0.77), with higher scores reflecting better HRQOL (Cella et al., 1995; Schipper, Clinch, McMurray, & Levitt, 1984). Patient comorbidity was measured using the Charlson Comorbidity Index, a tool with established reliability (r = 0.8–0.84) and validity (r = 0.71) (Chaudhry, Jin, & Meltzer; 2005; Mulrow, Gerety, Cornell, Lawrence, & Kanten, 1994). The measures were used for descriptive purposes.
Outcome variables used in this study were the Profile of Mood States (POMS), Medical Outcomes Study Social Support Survey (MOS-SS), and Family Satisfaction With End-of-Life Care (FAMCARE). Caregiver mood state was measured using POMS, where higher scores indicate a higher degree of mood disturbance. This tool has established reliability (a = 0.88–0.94) and moderate discriminant validity (McNair, Lorr, & Droppleman, 1971). The total POMS score captures the mood states of anger, depression, fatigue, tension, and vigor.
Caregiver social support was measured using MOS-SS, with higher scores reflecting more perceived social support. This tool has established reliability (a = 0.93) and validity (factor loadings greater than 0.6) (Mahmud, Awang, & Mohamed, 2004).
Satisfaction with care received at EOL was measured using FAMCARE, which measures the degree to which family members are satisfied with the health care received by the patient and family with respect to four components of care (i.e., information giving, availability of care, psychological care, and physical patient care), with higher scores reflecting more satisfaction with EOL care. The tool has established reliability (a = 0.93) and criterion validity (McCusker Scale of 0.8 and 0.77) (Aoun, Bird, Kristjanson, & Currow, 2010).
Postenrollment data collection points were at 3, 9, and 15 months. A monthly phone call was made by the RA to determine patient status (i.e., survival and location) and resource use (i.e., initiation of home care, placement in a nursing facility, or initiation of hospice services). If a patient died during the 15-month time period, which was the sample used for the current study, the RA scheduled a telephone interview eight weeks after the patient's death for the purpose of administering FAMCARE (Daly, Douglas, O'Toole, et al., 2010).
Data Analysis
All analyses were performed using SPSS®, version 20.0. Univariate comparisons of demographic and clinical characteristics of patients and caregivers were performed using one-way analysis of variance (ANOVA) for continuous variables, and chi-square for categorical variables. Hospice length of stay was highly skewed and exhibited kurtosis, and the Mann-Whitney U test was employed and reported. Multiple linear regression analysis was used to examine the impact of group on key outcome variables after controlling for influential variables. Repeated measures ANOVA was conducted to examine changes in POMS and MOS-SS over time. Covariates included variables that were statistically significant in comparison with experimental and control groups (e.g., caregiver gender), as well as variables that were shown to influence burden associated with EOL decision making (e.g., caregiver race) (Braun, Beyth, Ford, & McCullough, 2008; Jenkins, Lapelle, Zapka, & Kurent, 2005; Waters, 2001).
The key outcome variables examined were caregiver mood (POMS), social support (MOS-SS), and the 13 postdeath satisfaction items included in FAMCARE. FAMCARE has 20 items, 7 of which ask about EOL care for patients who died in the hospital. Only eight of the patients included in the analyses died in a hospital setting. Therefore, the sum of the 13 items that applied to EOL care regardless of location of death was used. For all analyses, a two-sided p value of less than 0.05 was considered to be statistically significant.
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