In the Journals

Caregivers of patients with cancer often have unmet support needs

Unmet health care service and information needs, as well as emotional and psychological needs, were common among caregivers of patients with cancer, according to study results.

Halina Sklenarova, MA, of the department of general internal medicine and psychosomatics at Heidelberg University Hospital in Germany, and colleagues evaluated data from 188 pairs of patients with cancer and their caregivers.

The mean age of the caregivers was 57.8 years, and 72.3% were female. The mean age of patients was 62.5 years, and 67% were male. Patients in the cohort had lung (34.6%), urological (34.6%) or gastrointestinal (30.8%) cancers.

Caregivers completed the Supportive Care Needs Survey self-report questionnaire and patients completed a corresponding questionnaire.

Results showed 43.6% of caregivers indicated having more than 10 unmet needs, and 42% indicated having fewer than 10 unmet needs. About one in seven (14.4%) caregivers reported having no unmet needs.

Of the four assessed domains, mean scores were highest among caregivers for health service and information needs (1.91), followed by emotional and psychological needs (1.72), work and social security needs (1.52), and communication and family needs (1.27).

The most frequent needs for support included help addressing patients’ concerns about physical or mental deterioration (52.7%), managing concerns about recurrence (44.6%) and working through feelings of death (40.8%). Other needs included those for accessing information about alternative therapies (36.4%), feeling confident that the patient’s doctors were coordinating care (36.2%) and obtaining the best care for the patient (35.3%).

Data using the National Comprehensive Cancer Network Distress Thermometer indicated caregivers had significantly more distress than patients (mean score, 5.47 vs. 4.75; P ˂ .01). Caregivers also expressed higher levels of anxiety using the Generalized Anxiety Disorder Scale-2 (mean score, 2.15 vs. 1.7; P ˂ .01).

When patients had a higher unmet number of needs, cancer caregivers were more likely to have health care service and information needs (P ˂ .01), emotional and psychological needs (P ˂ .01), work and social security needs (P ˂ .05) and communication and family needs (P ˂ .05).

“Due to the absence of strong predictors of caregiver needs, it is highly recommended to assess caregivers’ needs separately,” Sklenarova and colleagues wrote. “Only if the precise kind of requirement is known will professionals be able to offer caregiver-tailored help to this important group of individuals.”

These data support development more formal assessments and interventions for cancer caregivers, Teresa L. Deshields, PhD, of Alvin J. Siteman Cancer Center in St. Louis, and Allison J. Applebaum, PhD, of Memorial Sloan Kettering Cancer Center, wrote in an accompanying editorial.

“Identifying the needs of informal caregivers of patients with cancer is a necessary step in developing empirically supported treatments that address the unique experience of this population,” Deshields and Applebaum wrote. “Future research is needed to adapt and evaluate the efficacy of currently available, empirically supported interventions for anxiety and depression for cancer caregivers, as well as interventions to address specific areas of unmet needs highlighted in the current study, such as fear of disease recurrence and concerns about death and dying. The state of the science and empirically supported interventions for cancer caregivers remains in its infancy, and the time is ripe for this area of focus to become a priority for future research in psychooncology.” – by Alexandra Todak

Disclosure: Deshields reports a speakers bureau role with Lilly Oncology. The study researchers report no relevant financial disclosures. 

Unmet health care service and information needs, as well as emotional and psychological needs, were common among caregivers of patients with cancer, according to study results.

Halina Sklenarova, MA, of the department of general internal medicine and psychosomatics at Heidelberg University Hospital in Germany, and colleagues evaluated data from 188 pairs of patients with cancer and their caregivers.

The mean age of the caregivers was 57.8 years, and 72.3% were female. The mean age of patients was 62.5 years, and 67% were male. Patients in the cohort had lung (34.6%), urological (34.6%) or gastrointestinal (30.8%) cancers.

Caregivers completed the Supportive Care Needs Survey self-report questionnaire and patients completed a corresponding questionnaire.

Results showed 43.6% of caregivers indicated having more than 10 unmet needs, and 42% indicated having fewer than 10 unmet needs. About one in seven (14.4%) caregivers reported having no unmet needs.

Of the four assessed domains, mean scores were highest among caregivers for health service and information needs (1.91), followed by emotional and psychological needs (1.72), work and social security needs (1.52), and communication and family needs (1.27).

The most frequent needs for support included help addressing patients’ concerns about physical or mental deterioration (52.7%), managing concerns about recurrence (44.6%) and working through feelings of death (40.8%). Other needs included those for accessing information about alternative therapies (36.4%), feeling confident that the patient’s doctors were coordinating care (36.2%) and obtaining the best care for the patient (35.3%).

Data using the National Comprehensive Cancer Network Distress Thermometer indicated caregivers had significantly more distress than patients (mean score, 5.47 vs. 4.75; P ˂ .01). Caregivers also expressed higher levels of anxiety using the Generalized Anxiety Disorder Scale-2 (mean score, 2.15 vs. 1.7; P ˂ .01).

When patients had a higher unmet number of needs, cancer caregivers were more likely to have health care service and information needs (P ˂ .01), emotional and psychological needs (P ˂ .01), work and social security needs (P ˂ .05) and communication and family needs (P ˂ .05).

“Due to the absence of strong predictors of caregiver needs, it is highly recommended to assess caregivers’ needs separately,” Sklenarova and colleagues wrote. “Only if the precise kind of requirement is known will professionals be able to offer caregiver-tailored help to this important group of individuals.”

These data support development more formal assessments and interventions for cancer caregivers, Teresa L. Deshields, PhD, of Alvin J. Siteman Cancer Center in St. Louis, and Allison J. Applebaum, PhD, of Memorial Sloan Kettering Cancer Center, wrote in an accompanying editorial.

“Identifying the needs of informal caregivers of patients with cancer is a necessary step in developing empirically supported treatments that address the unique experience of this population,” Deshields and Applebaum wrote. “Future research is needed to adapt and evaluate the efficacy of currently available, empirically supported interventions for anxiety and depression for cancer caregivers, as well as interventions to address specific areas of unmet needs highlighted in the current study, such as fear of disease recurrence and concerns about death and dying. The state of the science and empirically supported interventions for cancer caregivers remains in its infancy, and the time is ripe for this area of focus to become a priority for future research in psychooncology.” – by Alexandra Todak

Disclosure: Deshields reports a speakers bureau role with Lilly Oncology. The study researchers report no relevant financial disclosures.