- Email: [email protected]
Eating habits and quality of life of patients receiving home parenteral nutrition in Israel
ARTICLE IN PRESS Clinical Nutrition (2008) 27, 95–99
Available at www.sciencedirect.com
http://intl.elsevierhealth.com/journals/clnu
ORIGINAL ARTICLE
Eating habits and quality of life of patients receiving home parenteral nutrition in Israel Vicky Oza, Miryam Theillab, Pierre Singerb, a
Teva Beity, Teva Israel, Israel Department of General Intensive Care and Institute of Nutrition Research, Rabin Medical Center, Beilinson Hospital, Petah Tiqva 49100 and the Sackler School of Medicine, Tel Aviv University, Tel Aviv, Israel
b
Received 2 November 2006; accepted 19 June 2007
KEYWORDS Home parenteral nutrition; Eating behavior; Quality of life
Summary Background & aims: Using the database of an infusion provider, we assessed the quality of life and the eating behavior of patients receiving long-term home parenteral nutrition (HPN). Methods: Fifty-one patients were recruited during a 2-month period and anthropometric measurements, etiology of the disease and length of therapy were noted. A questionnaire including seven questions evaluating four functions was completed by a student by phone interview. The FAACT (Functional Assessment of Anorexia/Cachexia Therapy questionnaire) defined the response from grade 0 (no acceptance) to grade 4 (full acceptance) and evaluated physical, social/familial, emotional and functional well-being. Results are expressed as mean7S.D. or median (range) and correlation calculated using the Pearson’s correlation test. Results: Fifty patients responded to the questionnaire. Median length on HPN was 27.5 months (range 5–180 months). More than 56% were aged between 17 and 59 years, 62% suffered from an intestinal disease and less than 10% from cancer. Ten percent were receiving HPN for 410 years. Physical activity was scored 1.7771.11, social activity 3.1870.96, emotional status 1.8871.17 and oral intake 1.9570.95. Physical activity was lower in females. Physical activity was highly related to emotional and social status (r ¼ 0.61, po0.0001 and r ¼ 0.73, po0.0001, respectively). Social status was negatively related to emotional level (r ¼ 0.43, po0.002) while emotional status influenced oral intake (r ¼ 0.45, po0.004). Age or length of therapy did not influence these factors. Conclusions: Patients on HPN have a low physical activity and an impaired quality of life despite a good social performance. Their emotional status is impaired and their oral intake strongly altered. These alterations are not related to time on therapy or age, but the
Corresponding author. Tel.: +972 3 9376521; fax: +972 3 9232333.
E-mail address: [email protected] (P. Singer). 0261-5614/$ - see front matter & 2007 Elsevier Ltd and European Society for Clinical Nutrition and Metabolism. All rights reserved. doi:10.1016/j.clnu.2007.06.016
ARTICLE IN PRESS 96
V. Oz et al. highest the physical activity, the better the emotional and social status. We should encourage these patients to increase their physical activity when possible. & 2007 Elsevier Ltd and European Society for Clinical Nutrition and Metabolism. All rights reserved.
Introduction Home parenteral nutrition (HPN) administered through a permanent catheter has become an established alternative to administering nutritional support to patients with severe, chronic gastrointestinal failure.1 First used by Shils et al. in 1967, the technique of administration has been improved, is safe, and has a low complication rate.2 In the United States, around 40,000 patients are presently receiving HPN every day and the yearly prevalence is around 120 per 1 million population.3 Mortality is mainly related to the etiology of the gastrointestinal failure.4,5 More than 70 patients received HPN in 2004 in Israel; however, this group has not been systematically analyzed to date. Apart from patients with cancer patients, the benefits of HPN in terms of survival have not been studied in patients with severe intestinal failure. In addition, the impact of HPN in terms of quality of life has yet to be adequately defined. Monitoring practices have recently been analyzed in 42 European centers6 and in six of them SF36 questionnaire was used systematically for quality of life assessment. In this study, mood and oral intake were assessed by many centers at each visit. Baxter et al.7 reviewed the instruments used to assess the quality of life of these patients and concluded that little data are available and there is a need for standardizing instruments to measure quality of life. In addition, eating behavior was not frequently assessed. During 2004, all HPN in Israel was provided by the same infusion provider. During this period, we assessed the quality of life and eating behavior of the patients receiving HPN using a questionnaire specifically designed for this purpose. We also tested whether the duration of HPN therapy was correlated with physical, emotional, social or nutritional activities.
Material and methods Fifty-one patients receiving HPN were recruited during 2 consecutive months. Anthropometric parameters, etiology of the underlying disease, and length of therapy were assessed. All the patients were asked to answer a questionnaire including seven questions related to four domains: physical well-being, social/family well-being, emotional well-being, and functional well-being. The questionnaire (FAACT or Functional Assessment of Anorexia/Cachexia Therapy questionnaire)8 focuses on eating behavior as well as quality of life. The questionnaire was completed by a medical student who received specific training for this task. Patients were questioned over the telephone and all responses and explanations duly noted by the student. The responses were graded from 0 (no acceptance at all) to 4 (full acceptance). Questions were directed to daily life (two questions) and physical activity (five questions), family life
(three questions), social life (two questions) and sexual life (two questions), level of depression (four questions), functional activities (two questions) and quality of life (five questions). In the case of children o15 years, answers were provided by their parents.
Statistical analysis Data from the questionnaires was analyzed and correlation calculated between patient characteristics (age, sex, physical activity) and the emotional, social, and nutritional parameters. Results are expressed as mean7S.D. or median (range) and correlation calculated using the Pearson’s correlation test.
Results A total of 51 patients (26 males and 25 females), or alternatively their parents, were recruited to participate in the study. Only one patient receiving HPN declined to participate. The mean age was 31.4723.7 years. The age distribution was as follows: 28 patients (56%) were aged between 17 and 59 years; 11 (22%) between 17 and 30 years; 17 (34%) between 31 and 59 years; 14 (28%) between 0 and 5 years and 8 (16%) were older than 60 years. Thirty-one patients (62%) suffered from intestinal disease, including nine (18%) diagnosed with Crohn’s disease. The underlying disease was cancer in six patients (12%), chronic diarrhea in two (4%), pseudo obstruction in three (6%), and miscellaneous diseases in a further eight (16%). Median length of time on HPN was 27.5 months (range 5–180 months). Thirty percent had received HPN for less than 12 months, 38% for 1–3 years, 22% for 4–9 years, and 10% for more than 10 years. The number of nights patients spent on HPN per week was 7 in 35 patients, 6 in 4 patients and 5 or less in 11 patients. Regarding autonomy, 40% of patients required no additional aid; of the remainder, 40% were aided by their parents, 14% by a spouse, 4% by their daughter-in-law, and 2% by other individuals. Fourteen percent of the remaining patients were treated by a specialized team at their domicile (CHECK NUMBERS4100%). Functional capacity was tested asking using two questions related to daily life and five questions related to activity. Results are shown in Table 1. Table 2 shows the familial support received by the patients. Most of the patients received good or excellent environmental support, provided by family and friends. However, some patients complained of a lack of support by friends (9 out of 22 answers). Regarding sexual activity, a low response rate was received. Twenty-six (86.7% out of 30 patients) were physically very close to their spouse, while 4 (13.3%) were not. Only 14
ARTICLE IN PRESS Eating habits and quality of life of patients receiving home parenteral nutrition in Israel
Table 1
97
Daily life and activity, number (%). N (%)
Lack of energy Feel sick Bedridden Interaction with side effects Pain Family life Nausea
Not at all
Almost not
Some
Yes
Completely
N total
15 11 18 27 14 7 24
5 5 5 4 7 1 3
6 5 8 4 11 6 6
9 11 10 5 7 3 5
15 11 9 5 10 14 12
50 43 50 45 49 31 50
(30) (25.6) (36) (60) (28.6) (22.6) (48)
(10) (11.6) (10) (8.9) (14.3) (14.3) (6)
(12) (11.6) (16) (8.9) (22.4) (19.4) (12)
(18) (25.6) (20) (11.1) (14.3) (9.7) (10)
(30) (25.6) (18) (11.1) (20.4) (45.2) (24)
N total is the number of patients answering the specific question.
Table 2
Family, social, and sexual life. N (%)
Close to friends Psychological support from family Friend support Family comprehension Happy with family communication Close to spouse Sexual life satisfaction
Table 3
Not at all
Almost not
Slightly
Yes
Absolutely
N
8 3 9 2 2 1 3
7 (16.7) 0 4 (9.8) 0 0 1 (3.3) 0
1 2 3 3 0 2 3
2 4 5 3 9 0 2
24 32 20 32 28 26 6
42 41 41 49 39 30 14
(19) (7.3) (22) (5) (5.1) (3.3) (21.4)
(2.4) (4.9) (7.3) (7.5) (6.7) (21.4)
(4.8) (9.8) (12.2) (7.5) (23.1) (14.3)
(57.1) (78) (48.8) (80) (71.8) (86.7) (42.9)
Level of depression. N (%)
Sad Confident dealing with disease Nervous Feeling improvement in condition
Not at all
Not
Moderately
Yes
Absolutely
Total
17 5 20 15
5 2 5 1
10 3 9 9
8 13 7 10
9 18 8 10
49 41 49 45
(34.7) (12.2) (40.8) (33.3)
(10.2) (4.9) (10.2) (2.2)
patients were forthcoming regarding their sexual life: six were completely satisfied (42.9%), two (14.3%) were quite satisfied, three (21.4%) were moderately satisfied, and two (21.4%) were unsatisfied. A sense of well-being and lack of depression was noted in most patients (Table 3). Regarding activities (Table 4), 21% of patients were working full-time. Thirty-four percent were not able to work at all, 12.5% almost not and 17 out of 32 patients declared that they were able to work partially at least. Most of those who were working (7 of 15 answers) were satisfied with their work, most (61.5%) declared that they were able to enjoy life, most (68.6%) were able to cope with their disease, and were sleeping quite well. However, 47.5% were not happy with their situation and quality of life. No statistical difference was found between workers and
(20.4) (7.3 (18.4) (20.0)
(16.3) (31.7) (14.3) (22.2)
(18.4) (43.9) (16.3) (22.2)
(100) (100) (100) (100)
non-workers regarding physical ability, emotion, social, and food intake aspects. The FAACT questionnaire was also used to test their eating behavior. Thirty-five patients were eating normally in addition to HPN. Most patients answered these questions (between 32 and 39 patients), reporting quite good appetite (51.3%), but not eating what they would like (23 of 37 patients). Most patients (68.6%) did not enjoy the food. Most patients (64.1%) were not worried about their weight, but complained of being too thin. While many patients retained their appetite, 43.7% did not tolerate ‘heavy’ foods and in most, satiety was reached quickly due to the feeling of gastric fullness. Many (47.4%) patients experienced abdominal pain during a meal. Family and friends did not pressurize the patients regarding oral intake.
ARTICLE IN PRESS 98
V. Oz et al.
Table 4
Functional activities and quality of life.
Able to work Enjoy work Deal with his disease Can enjoy life Sleeps well Enjoy good things Happy with his QOL
Not at all
Almost not
Moderately
Yes
Absolutely
Total
11 3 7 8 14 4 19
4 2 2 2 5 5 2
6 3 4 5 8 4 6
6 2 7 8 8 9 8
5 5 19 16 14 18 5
32 15 39 39 49 40 40
(34.4) (20) (17.9) (20.5) (28.6) (10) (47.5)
(12.5) (13.3) (5.1) (5.1) (10.2) (12.5) (5)
Table 5 Summary of the levels of physical, social, emotional, and nutritional activities.
Physical activity Social activity Emotional Status Oral intake
Number Mean S.D.
Minimum Maximum
50
1.77
1.11
0
4
43
3.18
0.96
0
4
49
1.88
1.17
0
4
39
1.95
0.95
0
4
Table 5 summarizes the physical, social, emotional, and nutritional levels of the studied population. No significant correlation was found between age and physical, emotional, social, or nutritional activities. The length of therapy did not influence these activities. However, physical activity was highly related to emotional (r ¼ 0.608, po0.0001) and nutritional (r ¼ 0.727, po0.0001) aspects. The social potential was negatively related to emotional level (r ¼ 0.453, po0.002) and emotional level was related to oral intake (r ¼ 0.454, po0.004). Women had a significantly lower level of physical activity.
Discussion Permanent HPN is a complex and invasive therapy that has been developed and provided for more than 20 years. More than 500 patients have received this therapy in Israel. Our study shows that most of the studied patients receiving this therapy are young and suffer from gastrointestinal diseases while the minority received HPN for oncological indications. Our patients showed a very good level of social activity but a lower level of work ability. Interestingly, the higher the level of social involvement, the less support was required from family or friends. The more the working and social level of activity, the higher was the nutritional intake. However, our study has limitations due to the small number of recruited patients. Difficulties, mainly psychological stress encountered by patients with intestinal failure have been reported in the literature.8 Patients reported feeling a burden for others, feeling isolated and described a loss of sexual drive and lowered energy levels contributing to impairment in quality of life.9
(18.8) (20) (10.3) (12.8) (16.3) (10) (15)
(18.8) (13.3) (17.9) (20.5) (16.3) (22.5) (20)
(15.6) (33.3) (48.7) (41) (28.6) (45) (12.5)
(100) (100) (100) (100) (100) (100) (100)
Measurements of quality of life have been performed in HPN and home enteral tube feeding patients.10 Karnofsky and Spitzer indices have been assessed using proxy rating, or self-rating using the EORTC QLQ C30 (European Organization for Research and Treatment of Cancer) questionnaire. All these questionnaires assess daily living, activity, emotional, social, and cognitive functioning. The EORTC QLQ C30 utilizes symptom scales (fatigue, pain, nausea, insomnia, appetite loss, constipation, diarrhea) and financial difficulties. The Revised Illness Perception Questionnaire (IPQ-R) has also been proposed to assess patient beliefs regarding their condition.11 Loeser et al.10 found that malnutrition was associated with a reduction in health-related quality of life and that quality of life may improve with nutritional status within 4 months of home enteral tube feeding using percutaneous endoscopic gastrostomy. In our study, we used the FAACT questionnaire to assess the quality of life together with the ability of our patients to eat at normally at least partly. This questionnaire includes social, activity, and emotional functioning with symptoms as well as pain, anxiety, sadness, insomnia, nausea, and vomiting. In addition, eating disorders can be reliably diagnosed. We showed that nutritional intake was related to level of work and social activity and inversely to emotional status. Other studies have shown a good correlation between FAACT questionnaire related to appetite and other symptoms.12,13 Winckler14 did not mention the FAACT questionnaire in her recent review, since FAACT was focuses in particular on appetite in relation to other emotional, physical, and nutritional parameters. The use of HPN in cancer patients is a subject of debate.15,16 There is a reluctance to prescribe HPN as palliative care for the last 3 months of life and this might also lead to reluctance to prescribe HPN in earlier disease stages.17,18 Only few cancer patients received HPN in our series, in comparison to other series, mostly as a result of the reluctance of physicians to prescribe HPN in this group of patients.19,20 The national HPN North America registry reported 5481 patients using HPN in 1995; the four main diagnoses included cancer, Crohn’s disease, ischemic bowel disease and motility disorders.4 It should, however, be emphasized that the palliative phase might often be of considerable duration and might include wide variations of treatments. Oncology treatment, tumor location or postoperative problems are frequently encountered and severe eating problems may be experienced. Starvation is the most frequent reason for malnutrition. HPN may be an important bridge until appetite is regained, and subsequently stopped.
ARTICLE IN PRESS Eating habits and quality of life of patients receiving home parenteral nutrition in Israel
Conclusions This study provides important insights into patients receiving HPN in Israel. Most of these patients are young, suffer from GIT disorders, and have received nutritional support for a period of 1–9 years. Their ability for social activity is high but only a minority has an active professional life. While expressing a high degree of confidence in the future, they do show signs of depression and at least some limitation in their quality of life. Additionally, while willing to eat, they experience significant side effects, which impair their ability to complete a meal. Nutritional activity was highly related to social and physical activity and inversely related to emotional functioning. The findings suggest that improvement of the psychological condition could be beneficial in this specific population, possibly improving their physical and social activities and thus their quality of life.
Conflict of interest statement Vicky Oz is an employee of the home care nutrition supplier Teva Beity.
Acknowledgements No grants or funding were received. Vicky Oz designed the study and organized the translation of the questionnaire as well as the collection of the data. Pierre Singer and Miryam Theilla reviewed the study protocol and prepared the manuscript after analysis of the data.
References 1. Ireton-Jones C, DeLegge M. Home parenteral nutrition registry: a five-year retrospective evaluation of outcomes of patients receiving home parenteral nutrition support. Nutrition 2005;21:156–60. 2. Howard L, Ament M, Fleming R, et al. Current use and clinical outcome of home parenteral and enteral nutrition therapies in the United States. Gastroenterology 1995;109:355–65. 3. Howard L. A global perspective of home parenteral and enteral nutrition. Nutrition 2000;16:625–8. 4. Scolapio CP, Fleming CR, Kelly DG, et al. Survival of home parenteral nutrition-treated patients: 20 years of experience at the Mayo Clinic. Mayo Clin Proc 1999;7:4217–22.
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5. Messing B, Crenn P, Beau P, Boutron-Ruault MC, Rambaud JC, Matuchansky C. Long-term survival and parenteral nutrition dependence in adult patients with the short bowel syndrome. Gastroenterology 1999;117:1043–50. 6. Wengler A, Micklewright A, Hebuterne X, et al. Monitoring of patients on home parenteral nutrition (HPN) in Europe: a questionnaire based study on monitoring practice in 42 centers. Clin Nutr 2006;25:693–700. 7. Baxter JP, Fayers PM, McKinlay AW. A review of the instruments used to assess the quality of life of adult patients with chronic intestinal failure receiving parenteral nutrition at home. Br J Nutr 2005;94:633–8. 8. Ribaudo JM, Cella D, Hahn EA, Lloyd SR, Tchekmedyian NS, Von Roenn J, et al. Re-validation and shortening of the Functional Assessment of Anorexia/Cachexia Therapy (FAACT) questionnaire. Qual Life Res 2000;9:1137–46. 9. Fortune DG, Varden J, Parker S, Harper L, Richards HL, Shaffer JL. Illness beliefs of patients on home parenteral nutrition (HPN) and their relation to emotional distress. Clin Nutr 2005;24:896–903. 10. Carlsson E, Bosaeus I, Nordgren S. Quality of life and concerns in patients with short bowel syndrome. Clin Nutr 2003;22: 445–52. 11. Loeser C, von Herz U, Kuchler T, Rzehak P, Muller MJ. Quality of life and nutritional state in patients on home enteral tube feeding. Nutrition 2003;19:605–11. 12. Chang VT, Xia Q, Kasimis B. The Functional Assessment of Anorexia/Cachexia Therapy (FAACT) Appetite Scale in veteran cancer patients. J Support Oncol 2005;3:377–82. 13. Lai JS, Cella D, Peterman A, Barocas J, Goldman S. Anorexia/ cachexia-related quality of life for children with cancer. Cancer 2005;104:1531–9. 14. Winckler MF. Quality of life in adult home parenteral nutrition patients. J Parenter Enteral Nutr 2005;29:162–70. 15. Jeppesen PB, Langholz E, Mortensen PB. Quality of life in patients receiving home parenteral nutrition. Gut 1999;44: 844–52. 16. Smith C. Quality of life in long-term total parenteral nutrition patients and their family caregivers. J Parenter Enteral Nutr 1993;17:501–6. 17. Torelli GF, Campos AC, Meguid MM. Use of TPN in terminally ill cancer patients. Nutrition 1999;15:655–7. 18. Bozetti F. Home parenteral nutrition in incurable cancer patients: a therapy, a basic humane care or something inbetween? Clin Nutr 2003;22:109–11. 19. Jonkers-Schuitema CF. HPN ¼ home palliative care? Clin Nutr 2004;23:1253–5. 20. Buchman AL. Must every cancer patient die with a central venous catheter? Clin Nutr 2002;21:269–71.
Available at www.sciencedirect.com
http://intl.elsevierhealth.com/journals/clnu
ORIGINAL ARTICLE
Eating habits and quality of life of patients receiving home parenteral nutrition in Israel Vicky Oza, Miryam Theillab, Pierre Singerb, a
Teva Beity, Teva Israel, Israel Department of General Intensive Care and Institute of Nutrition Research, Rabin Medical Center, Beilinson Hospital, Petah Tiqva 49100 and the Sackler School of Medicine, Tel Aviv University, Tel Aviv, Israel
b
Received 2 November 2006; accepted 19 June 2007
KEYWORDS Home parenteral nutrition; Eating behavior; Quality of life
Summary Background & aims: Using the database of an infusion provider, we assessed the quality of life and the eating behavior of patients receiving long-term home parenteral nutrition (HPN). Methods: Fifty-one patients were recruited during a 2-month period and anthropometric measurements, etiology of the disease and length of therapy were noted. A questionnaire including seven questions evaluating four functions was completed by a student by phone interview. The FAACT (Functional Assessment of Anorexia/Cachexia Therapy questionnaire) defined the response from grade 0 (no acceptance) to grade 4 (full acceptance) and evaluated physical, social/familial, emotional and functional well-being. Results are expressed as mean7S.D. or median (range) and correlation calculated using the Pearson’s correlation test. Results: Fifty patients responded to the questionnaire. Median length on HPN was 27.5 months (range 5–180 months). More than 56% were aged between 17 and 59 years, 62% suffered from an intestinal disease and less than 10% from cancer. Ten percent were receiving HPN for 410 years. Physical activity was scored 1.7771.11, social activity 3.1870.96, emotional status 1.8871.17 and oral intake 1.9570.95. Physical activity was lower in females. Physical activity was highly related to emotional and social status (r ¼ 0.61, po0.0001 and r ¼ 0.73, po0.0001, respectively). Social status was negatively related to emotional level (r ¼ 0.43, po0.002) while emotional status influenced oral intake (r ¼ 0.45, po0.004). Age or length of therapy did not influence these factors. Conclusions: Patients on HPN have a low physical activity and an impaired quality of life despite a good social performance. Their emotional status is impaired and their oral intake strongly altered. These alterations are not related to time on therapy or age, but the
Corresponding author. Tel.: +972 3 9376521; fax: +972 3 9232333.
E-mail address: [email protected] (P. Singer). 0261-5614/$ - see front matter & 2007 Elsevier Ltd and European Society for Clinical Nutrition and Metabolism. All rights reserved. doi:10.1016/j.clnu.2007.06.016
ARTICLE IN PRESS 96
V. Oz et al. highest the physical activity, the better the emotional and social status. We should encourage these patients to increase their physical activity when possible. & 2007 Elsevier Ltd and European Society for Clinical Nutrition and Metabolism. All rights reserved.
Introduction Home parenteral nutrition (HPN) administered through a permanent catheter has become an established alternative to administering nutritional support to patients with severe, chronic gastrointestinal failure.1 First used by Shils et al. in 1967, the technique of administration has been improved, is safe, and has a low complication rate.2 In the United States, around 40,000 patients are presently receiving HPN every day and the yearly prevalence is around 120 per 1 million population.3 Mortality is mainly related to the etiology of the gastrointestinal failure.4,5 More than 70 patients received HPN in 2004 in Israel; however, this group has not been systematically analyzed to date. Apart from patients with cancer patients, the benefits of HPN in terms of survival have not been studied in patients with severe intestinal failure. In addition, the impact of HPN in terms of quality of life has yet to be adequately defined. Monitoring practices have recently been analyzed in 42 European centers6 and in six of them SF36 questionnaire was used systematically for quality of life assessment. In this study, mood and oral intake were assessed by many centers at each visit. Baxter et al.7 reviewed the instruments used to assess the quality of life of these patients and concluded that little data are available and there is a need for standardizing instruments to measure quality of life. In addition, eating behavior was not frequently assessed. During 2004, all HPN in Israel was provided by the same infusion provider. During this period, we assessed the quality of life and eating behavior of the patients receiving HPN using a questionnaire specifically designed for this purpose. We also tested whether the duration of HPN therapy was correlated with physical, emotional, social or nutritional activities.
Material and methods Fifty-one patients receiving HPN were recruited during 2 consecutive months. Anthropometric parameters, etiology of the underlying disease, and length of therapy were assessed. All the patients were asked to answer a questionnaire including seven questions related to four domains: physical well-being, social/family well-being, emotional well-being, and functional well-being. The questionnaire (FAACT or Functional Assessment of Anorexia/Cachexia Therapy questionnaire)8 focuses on eating behavior as well as quality of life. The questionnaire was completed by a medical student who received specific training for this task. Patients were questioned over the telephone and all responses and explanations duly noted by the student. The responses were graded from 0 (no acceptance at all) to 4 (full acceptance). Questions were directed to daily life (two questions) and physical activity (five questions), family life
(three questions), social life (two questions) and sexual life (two questions), level of depression (four questions), functional activities (two questions) and quality of life (five questions). In the case of children o15 years, answers were provided by their parents.
Statistical analysis Data from the questionnaires was analyzed and correlation calculated between patient characteristics (age, sex, physical activity) and the emotional, social, and nutritional parameters. Results are expressed as mean7S.D. or median (range) and correlation calculated using the Pearson’s correlation test.
Results A total of 51 patients (26 males and 25 females), or alternatively their parents, were recruited to participate in the study. Only one patient receiving HPN declined to participate. The mean age was 31.4723.7 years. The age distribution was as follows: 28 patients (56%) were aged between 17 and 59 years; 11 (22%) between 17 and 30 years; 17 (34%) between 31 and 59 years; 14 (28%) between 0 and 5 years and 8 (16%) were older than 60 years. Thirty-one patients (62%) suffered from intestinal disease, including nine (18%) diagnosed with Crohn’s disease. The underlying disease was cancer in six patients (12%), chronic diarrhea in two (4%), pseudo obstruction in three (6%), and miscellaneous diseases in a further eight (16%). Median length of time on HPN was 27.5 months (range 5–180 months). Thirty percent had received HPN for less than 12 months, 38% for 1–3 years, 22% for 4–9 years, and 10% for more than 10 years. The number of nights patients spent on HPN per week was 7 in 35 patients, 6 in 4 patients and 5 or less in 11 patients. Regarding autonomy, 40% of patients required no additional aid; of the remainder, 40% were aided by their parents, 14% by a spouse, 4% by their daughter-in-law, and 2% by other individuals. Fourteen percent of the remaining patients were treated by a specialized team at their domicile (CHECK NUMBERS4100%). Functional capacity was tested asking using two questions related to daily life and five questions related to activity. Results are shown in Table 1. Table 2 shows the familial support received by the patients. Most of the patients received good or excellent environmental support, provided by family and friends. However, some patients complained of a lack of support by friends (9 out of 22 answers). Regarding sexual activity, a low response rate was received. Twenty-six (86.7% out of 30 patients) were physically very close to their spouse, while 4 (13.3%) were not. Only 14
ARTICLE IN PRESS Eating habits and quality of life of patients receiving home parenteral nutrition in Israel
Table 1
97
Daily life and activity, number (%). N (%)
Lack of energy Feel sick Bedridden Interaction with side effects Pain Family life Nausea
Not at all
Almost not
Some
Yes
Completely
N total
15 11 18 27 14 7 24
5 5 5 4 7 1 3
6 5 8 4 11 6 6
9 11 10 5 7 3 5
15 11 9 5 10 14 12
50 43 50 45 49 31 50
(30) (25.6) (36) (60) (28.6) (22.6) (48)
(10) (11.6) (10) (8.9) (14.3) (14.3) (6)
(12) (11.6) (16) (8.9) (22.4) (19.4) (12)
(18) (25.6) (20) (11.1) (14.3) (9.7) (10)
(30) (25.6) (18) (11.1) (20.4) (45.2) (24)
N total is the number of patients answering the specific question.
Table 2
Family, social, and sexual life. N (%)
Close to friends Psychological support from family Friend support Family comprehension Happy with family communication Close to spouse Sexual life satisfaction
Table 3
Not at all
Almost not
Slightly
Yes
Absolutely
N
8 3 9 2 2 1 3
7 (16.7) 0 4 (9.8) 0 0 1 (3.3) 0
1 2 3 3 0 2 3
2 4 5 3 9 0 2
24 32 20 32 28 26 6
42 41 41 49 39 30 14
(19) (7.3) (22) (5) (5.1) (3.3) (21.4)
(2.4) (4.9) (7.3) (7.5) (6.7) (21.4)
(4.8) (9.8) (12.2) (7.5) (23.1) (14.3)
(57.1) (78) (48.8) (80) (71.8) (86.7) (42.9)
Level of depression. N (%)
Sad Confident dealing with disease Nervous Feeling improvement in condition
Not at all
Not
Moderately
Yes
Absolutely
Total
17 5 20 15
5 2 5 1
10 3 9 9
8 13 7 10
9 18 8 10
49 41 49 45
(34.7) (12.2) (40.8) (33.3)
(10.2) (4.9) (10.2) (2.2)
patients were forthcoming regarding their sexual life: six were completely satisfied (42.9%), two (14.3%) were quite satisfied, three (21.4%) were moderately satisfied, and two (21.4%) were unsatisfied. A sense of well-being and lack of depression was noted in most patients (Table 3). Regarding activities (Table 4), 21% of patients were working full-time. Thirty-four percent were not able to work at all, 12.5% almost not and 17 out of 32 patients declared that they were able to work partially at least. Most of those who were working (7 of 15 answers) were satisfied with their work, most (61.5%) declared that they were able to enjoy life, most (68.6%) were able to cope with their disease, and were sleeping quite well. However, 47.5% were not happy with their situation and quality of life. No statistical difference was found between workers and
(20.4) (7.3 (18.4) (20.0)
(16.3) (31.7) (14.3) (22.2)
(18.4) (43.9) (16.3) (22.2)
(100) (100) (100) (100)
non-workers regarding physical ability, emotion, social, and food intake aspects. The FAACT questionnaire was also used to test their eating behavior. Thirty-five patients were eating normally in addition to HPN. Most patients answered these questions (between 32 and 39 patients), reporting quite good appetite (51.3%), but not eating what they would like (23 of 37 patients). Most patients (68.6%) did not enjoy the food. Most patients (64.1%) were not worried about their weight, but complained of being too thin. While many patients retained their appetite, 43.7% did not tolerate ‘heavy’ foods and in most, satiety was reached quickly due to the feeling of gastric fullness. Many (47.4%) patients experienced abdominal pain during a meal. Family and friends did not pressurize the patients regarding oral intake.
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V. Oz et al.
Table 4
Functional activities and quality of life.
Able to work Enjoy work Deal with his disease Can enjoy life Sleeps well Enjoy good things Happy with his QOL
Not at all
Almost not
Moderately
Yes
Absolutely
Total
11 3 7 8 14 4 19
4 2 2 2 5 5 2
6 3 4 5 8 4 6
6 2 7 8 8 9 8
5 5 19 16 14 18 5
32 15 39 39 49 40 40
(34.4) (20) (17.9) (20.5) (28.6) (10) (47.5)
(12.5) (13.3) (5.1) (5.1) (10.2) (12.5) (5)
Table 5 Summary of the levels of physical, social, emotional, and nutritional activities.
Physical activity Social activity Emotional Status Oral intake
Number Mean S.D.
Minimum Maximum
50
1.77
1.11
0
4
43
3.18
0.96
0
4
49
1.88
1.17
0
4
39
1.95
0.95
0
4
Table 5 summarizes the physical, social, emotional, and nutritional levels of the studied population. No significant correlation was found between age and physical, emotional, social, or nutritional activities. The length of therapy did not influence these activities. However, physical activity was highly related to emotional (r ¼ 0.608, po0.0001) and nutritional (r ¼ 0.727, po0.0001) aspects. The social potential was negatively related to emotional level (r ¼ 0.453, po0.002) and emotional level was related to oral intake (r ¼ 0.454, po0.004). Women had a significantly lower level of physical activity.
Discussion Permanent HPN is a complex and invasive therapy that has been developed and provided for more than 20 years. More than 500 patients have received this therapy in Israel. Our study shows that most of the studied patients receiving this therapy are young and suffer from gastrointestinal diseases while the minority received HPN for oncological indications. Our patients showed a very good level of social activity but a lower level of work ability. Interestingly, the higher the level of social involvement, the less support was required from family or friends. The more the working and social level of activity, the higher was the nutritional intake. However, our study has limitations due to the small number of recruited patients. Difficulties, mainly psychological stress encountered by patients with intestinal failure have been reported in the literature.8 Patients reported feeling a burden for others, feeling isolated and described a loss of sexual drive and lowered energy levels contributing to impairment in quality of life.9
(18.8) (20) (10.3) (12.8) (16.3) (10) (15)
(18.8) (13.3) (17.9) (20.5) (16.3) (22.5) (20)
(15.6) (33.3) (48.7) (41) (28.6) (45) (12.5)
(100) (100) (100) (100) (100) (100) (100)
Measurements of quality of life have been performed in HPN and home enteral tube feeding patients.10 Karnofsky and Spitzer indices have been assessed using proxy rating, or self-rating using the EORTC QLQ C30 (European Organization for Research and Treatment of Cancer) questionnaire. All these questionnaires assess daily living, activity, emotional, social, and cognitive functioning. The EORTC QLQ C30 utilizes symptom scales (fatigue, pain, nausea, insomnia, appetite loss, constipation, diarrhea) and financial difficulties. The Revised Illness Perception Questionnaire (IPQ-R) has also been proposed to assess patient beliefs regarding their condition.11 Loeser et al.10 found that malnutrition was associated with a reduction in health-related quality of life and that quality of life may improve with nutritional status within 4 months of home enteral tube feeding using percutaneous endoscopic gastrostomy. In our study, we used the FAACT questionnaire to assess the quality of life together with the ability of our patients to eat at normally at least partly. This questionnaire includes social, activity, and emotional functioning with symptoms as well as pain, anxiety, sadness, insomnia, nausea, and vomiting. In addition, eating disorders can be reliably diagnosed. We showed that nutritional intake was related to level of work and social activity and inversely to emotional status. Other studies have shown a good correlation between FAACT questionnaire related to appetite and other symptoms.12,13 Winckler14 did not mention the FAACT questionnaire in her recent review, since FAACT was focuses in particular on appetite in relation to other emotional, physical, and nutritional parameters. The use of HPN in cancer patients is a subject of debate.15,16 There is a reluctance to prescribe HPN as palliative care for the last 3 months of life and this might also lead to reluctance to prescribe HPN in earlier disease stages.17,18 Only few cancer patients received HPN in our series, in comparison to other series, mostly as a result of the reluctance of physicians to prescribe HPN in this group of patients.19,20 The national HPN North America registry reported 5481 patients using HPN in 1995; the four main diagnoses included cancer, Crohn’s disease, ischemic bowel disease and motility disorders.4 It should, however, be emphasized that the palliative phase might often be of considerable duration and might include wide variations of treatments. Oncology treatment, tumor location or postoperative problems are frequently encountered and severe eating problems may be experienced. Starvation is the most frequent reason for malnutrition. HPN may be an important bridge until appetite is regained, and subsequently stopped.
ARTICLE IN PRESS Eating habits and quality of life of patients receiving home parenteral nutrition in Israel
Conclusions This study provides important insights into patients receiving HPN in Israel. Most of these patients are young, suffer from GIT disorders, and have received nutritional support for a period of 1–9 years. Their ability for social activity is high but only a minority has an active professional life. While expressing a high degree of confidence in the future, they do show signs of depression and at least some limitation in their quality of life. Additionally, while willing to eat, they experience significant side effects, which impair their ability to complete a meal. Nutritional activity was highly related to social and physical activity and inversely related to emotional functioning. The findings suggest that improvement of the psychological condition could be beneficial in this specific population, possibly improving their physical and social activities and thus their quality of life.
Conflict of interest statement Vicky Oz is an employee of the home care nutrition supplier Teva Beity.
Acknowledgements No grants or funding were received. Vicky Oz designed the study and organized the translation of the questionnaire as well as the collection of the data. Pierre Singer and Miryam Theilla reviewed the study protocol and prepared the manuscript after analysis of the data.
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