Quality of Life in Long‐Term Total Parenteral Nutrition Patients and Their Family Caregivers

Abstract

The purpose of this study was to identify individual and family variables associated with patient and caregiver quality of life. Perceived quality of life has been associated with improved outcomes and compliance. Methods included telephone interviews of 178 families, randomly selected from academic, hospital, and infusion agencies across the United States, with 116 follow-up questionnaires returned. Patients had varied bowel disorders requiring total parenteral nutrition for an average of 4.6 years. Patients were an average of 52.0 years old; caregivers averaged 52.5 years of age. Coded interview data indicated that caregivers assist patients daily (for a mean of 4.2 hours) and provide emotional support. Problems such as loss of friends, loss of employment, and depression were reported in two thirds of the families. Overall low quality of life was associated with length of time on total parenteral nutrition, fewer family coping skills, and inability to get along on income, whereas higher quality of life was associated with higher self-esteem and quality in the relationship. Preparing families for potential social problems or situations related to depression while also enhancing financial assistance, self-esteem, quality in the relationship, and coping skills may increase both patient and caregiver quality of life.

Health-related quality of life of mothers of children with leukemia in Japan

“…Health-related quality of life (HRQOL) has been studied among caregivers of patients with dementia [3][4][5][6], cancer [7][8][9][10][11][12], end stage renal disease [13], multiple sclerosis [14], and those receiving total parenteral nutrition [15]. While Reichenberg and Broberg [16] showed that the QOL of the caregivers of children with asthma was related to the severity of the asthma, Price et al [17] concluded that caregiver affect may have a considerable influence on reports of caregiver QOL.…”

Satisfaction in Different Life Domains in Children Receiving Home Parenteral Nutrition and Their Families

“…4 However, QOL has been assessed rarely in adult patients receiving HPN. [5][6][7][8][9][10] To determine whether HPN, and underlying digestive disease, adversely influences QOL of children and their families, we conducted a national multicenter study involving all the pediatric HPN-authorized centers in France. We also aimed to assess factors influencing QOL of the children treated by HPN.…”

Short Bowel Syndrome: Parenteral Nutrition Versus Intestinal Transplantation. Where Are We Today?

“…Smith et al found that the overall low QOL was associated with the length of time of HPN, fewer family coping skills, and inability to get along on income, whereas higher QOL was associated with higher self-esteem and quality in the family relationship. Jeppesen et al reported that QOL is reduced in patients on HPN compared with those with anatomical or functional SBS not receiving HPN, and comparable with that reported for patients with chronic renal failure treated by dialysis [28-30, 81,82].…”

“…Different investigators have reached different conclusions regarding QOL in HPN patients [81,82]. Smith et al found that the overall low QOL was associated with the length of time of HPN, fewer family coping skills, and inability to get along on income, whereas higher QOL was associated with higher self-esteem and quality in the family relationship.…”