844
`
`Gut 1999;44:844–852
`
`Quality of life in patients receiving home
`parenteral nutrition
`
`P B Jeppesen, E Langholz, P B Mortensen
`
`Abstract
`Background/Aims—Quality of life is an
`important determinant of the eVective-
`ness of health technologies, but it has
`rarely been assessed in patients receiving
`home parenteral nutrition (HPN).
`Patients/Methods—The non-disease spe-
`cific sickness impact profile (SIP) and the
`disease specific inflammatory bowel dis-
`ease questionnaire (IBDQ) were used on a
`cohort of 49 patients receiving HPN, and
`the results compared with those for 36
`non-HPN patients with either anatomical
`(<200 cm) or functional (faecal energy
`excretion >2.0 MJ/day (~ 488 kcal/day))
`short bowel.
`Results—In the HPN patients the SIP
`scores were worse (higher) overall (17
`(13)% v 8 (9)%) and with regard to physi-
`cal (13 (15)% v 5 (8)%) and psychosocial
`(14 (12)% v 9 (11)%) dimensions and inde-
`pendent categories (20 (12)% v 9 (8)%)
`compared with the non-HPN patients
`(means (SD); all p<0.001). The IBDQ
`scores were worse (lower) in the HPN
`patients overall (5.0 (4.3–5.7) v 5.6 (4.8–
`6.2)) and with regard to systemic symp-
`toms (3.8 (2.8–5.4) v 5.2 (3.9–5.9)) and
`emotional (5.3 (4.4–6.2) v 5.8 (5.4–6.4))
`and social (4.3 (3.4–5.5) v 4.8 (4.5–5.8))
`function (median (25–75%); all p<0.05),
`but only tended to be worse with regard to
`bowel symptoms (5.2 (4.8–6.1) v 5.7 (4.9–
`6.4), p = 0.08). HPN also reduced quality
`of life in patients with a stoma, whereas a
`stoma did not reduce quality of life among
`the non-HPN patients. Female HPN pa-
`tients and HPN patients older than 45
`scored worse.
`Conclusion—Quality of life is reduced in
`patients on HPN compared with those
`with anatomical or functional short bowel
`not receiving HPN, and compares with
`that reported for patients with chronic
`renal failure treated by dialysis.
`(Gut 1999;44:844–852)
`
`Keywords: parenteral nutrition; quality of life; sickness
`impact profile; inflammatory bowel disease
`
`Parenteral nutrition is a lifesaving procedure in
`patients who have intestinal failure defined as
`inadequate intestinal function for absorption of
`nutrients and electrolytes.1 While in hospital,
`the patients who can be maintained on
`parenteral nutrition are educated in the aseptic
`infusion of nutrients and electrolytes, thereby
`avoiding the metabolic disturbances and mal-
`nutrition seen as a consequence of intestinal
`
`failure. When qualified in this complex proce-
`dure, the patients are discharged for home
`parenteral nutrition (HPN). Intestinal trans-
`plantation on the other hand is the ultimate
`lifesaving option when complications impede
`parenteral support, such as progressive liver
`failure, serial septic episodes, and venous inac-
`cessibility, most frequently seen in the paediat-
`ric population.2 3
`Moving the parenteral support from the
`hospital to the home results in a significant gain
`in quality of life,4 and as intestinal adaptation
`occurs, some patients may even be weaned oV
`parenteral
`supplements. Others, however,
`experience irreversible intestinal failure and
`face life-long complex technological nutritional
`support, which inevitably has an impact on
`their quality of life. HPN is a time consuming
`intrusive procedure, and HPN patients with
`intestinal
`failure are often troubled by the
`inconvenience of high intestinal output, pres-
`ence of a stoma, fear of incontinence, altered
`body image, etc. These factors may impose
`severe restrictions on daily life with regard to
`social and leisure activities and emotional
`function, and the presence of malnutrition and
`dehydration in spite of HPN therapy may affect
`physical activity. In these patients the quality
`control of medical care must be focused
`towards proper control of the symptoms and
`complications of intestinal failure and treat-
`ment with HPN, aimed at full rehabilitation of
`the HPN patient.
`As the results of intestinal transplantation
`will probably improve in the coming years, this
`procedure may become an alternative to HPN
`on the lines of renal transplantation versus
`dialysis, not only on vital indications, but also
`with the aim of improving quality of life in
`these patients.
`In order to understand the experience of
`chronic illness and to describe behavioural
`dysfunction and problems related to HPN
`treatment, comparisons were made, using vali-
`dated quality of life measurement techniques,
`between a population of patients receiving
`HPN monitored at the intestinal failure unit in
`Copenhagen in July 1997 and a group of non-
`HPN patients with known severe malabsorp-
`tion, who managed without parenteral supple-
`ments.
`
`Materials and methods
`QUESTIONNAIRES
`The study was based on two validated quality
`of
`life questionnaires:
`the sickness impact
`
`Abbreviations used in this paper: HPN, home
`parenteral nutrition; IBDQ, inflammatory bowel
`disease questionnaire; SIP, sickness impact profile.
`
`Department of
`Medicine CA, Section
`of Gastroenterology
`2121, Rigshospitalet,
`University of
`Copenhagen, Denmark
`P B Jeppesen
`E Langholz
`P B Mortensen
`
`Correspondence to:
`Dr P B Jeppesen,
`Department of Medicine
`CA, Section of
`Gastroenterology 2121,
`Rigshospitalet, Blegdamsvej
`9, DK-2100 Copenhagen,
`Denmark.
`
`Accepted for publication
`6 January 1999
`
`Page 1
`
`

`
`Quality of life with home parenteral nutrition
`
`845
`
`profile (SIP)5 and the inflammatory bowel dis-
`ease questionnaire (IBDQ).6
`The SIP is a non-disease specific behaviour
`based measure of sickness related dysfunction
`designed to cover patient perception of per-
`formance in areas of activity in everyday life. It
`contains 136 items in two main dimensions
`(physical (ambulation and mobility, body care
`and movement) and psychosocial (social inter-
`action, alertness and emotional behaviour,
`communication)) and five independent catego-
`ries
`(sleep and rest, eating, work, house
`keeping, recreation and pastimes). It is de-
`signed to be broadly applicable across types
`and severities of
`illness and across demo-
`graphic and cultural subgroups. It has been
`used to collect and evaluate sickness related
`behavioural dysfunction in various diseases7 8
`and was chosen for this study to provide a
`measure of the non-disease specific function of
`the two groups of patients. Patients were asked
`to endorse or check those statements that
`accorded with their present situation. No posi-
`tive answers was equivalent to no behavioural
`dysfunction. The SIP percentage scores of the
`dimensions and categories were obtained by
`summing the number of positive statements to
`the items in each dimension and category,
`dividing that sum by the total sum of the possi-
`ble values, and multiplying the quotient by
`100. Zero per cent indicates the best possible
`function (absence of dysfunction), whereas
`100% indicates presence of all possible dys-
`functional behaviour.
`At the end of the SIP questionnaire, patients
`were asked to mark their overall quality of life
`on a 9 cm visual analogue scale. At the left at 0
`cm a miserable quality of life was indicated,
`whereas an ideal quality of life was indicated at
`9 cm at the right end of the scale.
`The IBDQ was developed to measure
`subjective health status
`for patients with
`inflammatory bowel disease. The 32 item
`questionnaire examines four aspects of pa-
`tients’ lives: symptoms directly related to the
`primary bowel disturbance (10 questions), sys-
`temic symptoms (five questions), emotional
`(12 questions), and social
`function (five
`questions). This questionnaire is disease spe-
`cific and was chosen to focus on bowel related
`symptoms and their impact on quality of life.
`The response options for each question were
`framed as a seven point scale on which 7 repre-
`sented best function and 1 represented worst
`function. The score of each aspect has been
`given as a median on the seven point scale.
`
`EXPERIMENTAL DESIGN AND PATIENTS
`In June 1997 the two questionnaires were
`mailed to the total cohort of 57 patients
`(corresponding to 75% of patients receiving
`HPN in Denmark) followed at the intestinal
`failure unit in Copenhagen receiving HPN
`because of
`intestinal
`failure secondary to
`benign disease, and to 45 non-HPN patients,
`who had an anatomical and/or functional short
`bowel defined as <200 cm of remnant small
`bowel (26 patients) or a daily faecal energy loss
`measured by bomb calorimetry exceeding 2.0
`MJ/day (~ 488 kcal/day) during their
`last
`
`admission (37 patients). Written reminders
`were sent to non-responders after two months
`and the study was closed for inclusion at three
`months.
`The population of patients receiving HPN in
`Denmark and the standardised care of these
`patients has been described in a recent study.9
`None of the patients had a history of an under-
`lying psychiatric disorder. In only one HPN
`patient was the impairment of quality of life
`evidently secondary to the underlying disease
`and not necessarily related directly to HPN
`therapy. This patient suVered from Charcot-
`Marie-Tooth syndrome, had intestinal dysmo-
`tility, and was partly immobilised as a result of
`the disease.
`The HPN patients and their relatives were
`trained by a special
`team. An instruction
`manual was handed out, and the patients were
`discharged from hospital when they were able
`to carry out the procedures. Thus the HPN
`consumers were taught to be totally independ-
`ent of nursing involvement with routine
`infusion. Home care companies delivered the
`HPN products, and even supplied them if the
`patients were away from their home town.
`Single-lumen catheters, inserted through the
`subclavian, jugular, or femoral vein and ad-
`vanced to the vena caval-right atrial junction,
`were used. Administration was generally at
`night, but
`six patients with large stomal
`volumes had additional infusions of saline dur-
`ing the day. The recommended infusion time of
`standard 3 litre HPN bags was 10 hours. Infu-
`sion was by gravity in all patients.
`The patients had 24 hour access to the intes-
`tinal failure unit in Copenhagen for emergen-
`cies. Nursing support at home was instituted
`for seven patients. All patients in this study
`were monitored in our outpatient clinic at
`intervals of about 6–12 weeks. During these
`visits patients were clinically assessed, weighed,
`and routine blood tests taken. At intervals of
`about one year, intestinal function was assessed
`using balance techniques that measured diet
`and faecal weight and energy content by bomb
`calorimetry. In the HPN patients the parenteral
`energy and electrolyte supplements were ad-
`justed on a clinical basis to maintain normal
`body weight, hydration, diuresis, and levels of
`plasma albumin and electrolytes. This infor-
`mation was obtained from medical records,
`and remnant intestinal
`length was obtained
`from surgical records. The length of the colon
`was expressed in terms of percentage of the
`usual length by the method of Cummings et
`al.10 Basal energy expenditure was calculated
`by Harris-Benedict equations using actual
`body weights.11
`
`ETHICS
`All procedures were performed in accordance
`with the ethical standards of the Helsinki Dec-
`laration of 1975, as revised in 1983. Patients
`gave their informed consent.
`
`STATISTICAL ANALYSIS
`A non-parametric Mann-Whitney rank sum
`test was used for the comparison of patient
`characteristics of the two study groups, the
`
`Page 2
`
`

`
`846
`
`Jeppesen, Langholz, Mortensen
`
`Table 1 Demographics of patients on home parenteral nutrition (HPN) and those not
`
`Sex (female/male)
`Diagnosis (CD/MD+OP/dysmotility)
`Age (years)
`Height (cm)
`Weight (kg)
`Body mass index (kg/m2)
`Remnant small bowel (cm)
`Remnant colon (%)
`Patients with a stoma (n)
`Diet energy intake
`(MJ/day)
`(kcal/day)
`Energy absorption/BEE (%)
`Faecal weight (kg/day)
`
`HPN (n = 49)
`
`Non-HPN (n = 36)
`
`p Value
`
`31/18
`(31/8/10)
`45.4 (37.7–56.9)
`167 (163–174)
`57.4 (51.3–64.9)
`20.8 (18.9–22.8)
`140 (74–233)
`0 (0–64)
`38
`
`20/16
`(30/6/0)
`50.0 (44.1–60.4)
`170 (162–175)
`63.2 (56.1–69.3)
`22.2 (20.0–24.0)
`200 (148–246)
`29 (0–86)
`17
`
`0.62†
`0.01†
`0.16*
`0.47*
`0.03*
`0.046*
`0.03*
`0.21*
`0.008†
`
`8.12 (6.30–10.17)
`1941 (1505–2429)
`72 (50–94)
`1.87 (0.95–2.80)
`
`11.49 (9.13–13.56) <0.001*
`2745 (2182–3238)
`127 (113–150)
`1.25 (0.67–1.71)
`
`<0.001*
`0.03*
`
`Results are expressed as median (25–75%). *The Mann-Whitney rank sum test or the †♻2 test was
`used for comparison between groups. CD, Crohn’s disease; MD+OP, patients with intestinal
`resections because of mesenteric vascular disease or complications of intra-abdominal surgery.
`BEE, basal energy expenditure calculated by the Harris-Benedict equations using actual body
`weights.11
`
`scores on the visual analogue scale in the SIP
`questionnaires, and the medians between
`groups in the IBDQ questionnaires. The ♻2 or
`Fisher exact test was used for comparison of
`the frequencies of confirmatory answers in the
`SIP questionnaire. The statistical software
`used was SigmaStat for Windows Version 2.0
`(copyright 1992–1995; Jandel Corporation,
`Erkrath, Germany). p<0.05 was considered to
`indicate statistical significance.
`
`Results
`PATIENT DEMOGRAPHICS
`Forty nine (86%) of the HPN patients and 36
`(80%) of the non-HPN patients returned com-
`pleted questionnaires; table 1 gives the demo-
`graphics of these patients. The median dura-
`tion of HPN treatment was 5.0 (range
`0.2–27.8) years. The HPN patients were given
`a median of 2.23 (range 0.2–5.5) litres of
`parenteral fluid per day and 3.97 (range
`0.0–10.5) MJ/day (~ 948 (range 0–2508) kcal/
`
`day) corresponding to a median of 73% of their
`basal energy expenditure. The HPN was
`infused for a median of seven (range four to
`seven) nights on a cyclic nocturnal basis, but
`six patients had saline supplements during
`daytime. The two groups did not diVer signifi-
`cantly with regard to sex ratio or age.
`Significantly more of the patients receiving
`HPN had a dysmotility disorder. Body mass
`index was lower in the HPN patients because of
`a lower body weight compared with the
`non-HPN patients. The remnant small bowel
`was significantly shorter and the presence of a
`stoma more predominant in the HPN patients
`compared with the non-HPN patients. In spite
`of a lower dietary energy intake, the HPN
`patients had a higher faecal weight than the
`non-HPN patients. The energy absorption in
`relation to the basal energy expenditure was
`72% and 127% in the two groups respectively
`(p<0.001).
`
`SIP SCORES
`Figure 1 gives a comparison of the overall SIP
`scores, dimensions, and categories between the
`HPN and non-HPN patients. A score of 0%
`indicates the best possible function (absence of
`dysfunction), whereas 100% indicates presence
`of all possible dysfunctional behaviour. The
`patients receiving HPN scored worse (higher
`scores) in all areas of activity. All 136 questions
`were individually compared in order to identify
`diVerences among the HPN and the non-HPN
`patients.
`
`Physical dimension
`The responses to questions on ambulation and
`mobility showed that the HPN patients used
`public transport less frequently (41%) than the
`non-HPN patients (11%) (p = 0.006). The
`HPN patients reported that they spent more
`
`SIP score
`
`p value
`
`Dimension
`
`Category
`
`HPN
`
`non-HPN
`
`Physical
`
`Ambulation and mobility (22)
`Body care and movement (23)
`Total physical (45)
`
`17 (19)%
`10 (15)%
`13 (15)%
`
`6 (13)%
`4 (7)%
`5 (8)%
`
`11 (15)%
`10 (15)%
`1 (4)%
` 9 (11)%
`
`12 (14)%
`2 (5)%
`56 (50)%
`10 (14)%
`15 (20)%
`9 (8)%
`
`<0.001
`<0.001
`<0.001
`
`<0.001
`0.007
`0.010
`<0.001
`
`0.010
`<0.001
`0.004
`<0.001
`<0.001
`<0.001
`
`SIP
`
`Psychosocial
`
`Independent
`categories
`
`Overall (136)
`
`Social interaction (20)
`Alertness and emotional behaviour (19)
`Communication (9)
`Total psychosocial (48)
`
`18 (13)%
`18 (20)%
` 3 (11)%
`14 (12)%
`
`Sleep and rest (7)
`Eating (9)
`Work (9)
`Home management (10)
`Recreation and pastimes (8)
`Total independent categories (41)
`
`21 (16)%
`20 (12)%
`86 (35)%
`25 (22)%
`32 (27)%
`20 (12)%
`
`17 (13)%
`
`8 (9)%
`
`<0.001
`
`VAS score (0–9 cm, 9 cm best)
`
`0.008
`6.8 (2.2) cm
`4.9 (2.4) cm
`Figure 1 Comparison of SIP scores between patients receiving home parenteral nutrition (HPN) and those who did not.
`Results are expressed as mean (SD). Frequencies of confirmatory answers in the SIP questionnaire were compared between
`groups using the ♻2 test or alternatively Fisher’s exact test. The VAS scores were compared using a Mann-Whitney rank
`sum test. The values in parentheses in the category column give the numbers of items in each category. Zero per cent
`indicates the best possible function (absence of dysfunction), whereas 100% indicates presence of all possible dysfunctional
`behaviour.
`
`Page 3
`
`

`
`Quality of life with home parenteral nutrition
`
`847
`
`Table 2 Inflammatory bowel disease questionnaire (IBDQ) scores for patients on home
`parenteral nutrition (HPN) and those not
`
`Bowel symptoms
`Bowel movement frequency
`Loose bowel movements
`Cramps in abdomen
`Pain in abdomen
`Passing gas
`Abdominal boating
`Rectal bleeding
`Bathroom though bowel empty
`Accidental soiling of underpants
`Feeling sick to the stomach
`Total
`Systemic symptoms
`Feeling of fatigue/tiredness
`Feeling of energy
`General unwell feeling
`Poor sleeping or frequent wakening
`Problems to maintain weight
`Total
`Emotional function
`Frustrated, impatient, restless
`Worries of new surgery
`Fear of not finding washroom
`Feeling depressed or discouraged
`Worries of cancer or illness
`Relaxed and free of tension
`Embarrassment due to bowel disease
`Feeling tearful or upset
`Anger due to bowel disease
`Irritability
`Lack of understanding from others
`Feeling satisfied, happy, pleased
`Total
`Social function
`Work
`Delay/cancel social arrangements
`DiYculties in leisure/sports activities
`Avoiding events with no washroom close at hand
`Limitations in sexual activity
`Total
`Overall
`
`HPN
`
`non-HPN
`
`p Value
`
`7.0 (4.0–7.0)
`1.0 (1.0–6.2)
`7.0 (3.0–7.0)
`4.0 (2.0–7.0)
`7.0 (5.0–7.0)
`7.0 (3.3–7.0)
`7.0 (7.0–7.0)
`7.0 (7.0–7.0)
`7.0 (4.0–7.0)
`5.0 (4.0–7.0)
`5.2 (4.8–6.1)
`
`4.0 (2.0–5.0)
`3.0 (2.0–4.0)
`4.0 (3.0–6.8)
`3.0 (1.0–7.0)
`7.0 (6.0–7.0)
`3.8 (2.8–5.4)
`
`5.5 (3.0–7.0)
`7.0 (5.0–7.0)
`7.0 (4.8–7.0)
`5.0 (3.0–7.0)
`7.0 (6.0–7.0)
`3.0 (1.0–5.8)
`7.0 (7.0–7.0)
`6.0 (4.0–7.0)
`6.0 (3.0–7.0)
`5.0 (4.0–7.0)
`7.0 (4.0–7.0)
`4.0 (3.0–5.0)
`5.3 (4.4–6.2)
`
`1.0 (1.0–1.0)
`7.0 (4.5–7.0)
`5.0 (1.0–7.0)
`7.0 (7.0–7.0)
`1.0 (1.0–6.0)
`4.3 (3.4–5.5)
`5.0 (4.3–5.7)
`
`7.0 (4.0–7.0)
`3.0 (1.0–4.0)
`7.0 (6.0–7.0)
`7.0 (5.0–7.0)
`7.0 (3.0–7.0)
`7.0 (3.3–7.0)
`7.0 (7.0–7.0)
`7.0 (7.0–7.0)
`7.0 (4.0–7.0)
`7.0 (6.5–7.0)
`5.7 (4.9–6.4)
`
`4.0 (3.0–7.0)
`3.3 (3.0–4.0)
`4.5 (3.0–7.0)
`4.0 (3.0–7.0)
`7.0 (7.0–7.0)
`5.2 (3.9–5.9)
`
`7.0 (4.0–7.0)
`7.0 (4.5–7.0)
`7.0 (4.0–7.0)
`7.0 (4.0–7.0)
`7.0 (7.0–7.0)
`4.0 (3.0–6.0)
`7.0 (4.0–7.0)
`7.0 (6.0–7.0)
`7.0 (6.3–7.0)
`5.5 (4.0–7.0)
`7.0 (6.8–7.0)
`5.0 (4.0–5.0)
`5.8 (5.4–6.4)
`
`1.0 (1.0–7.0)
`7.0 (7.0–7.0)
`7.0 (2.5–7.0)
`7.0 (7.0–7.0)
`1.0 (1.0–6.0)
`4.8 (4.5–5.8)
`5.6 (4.8–6.2)
`
`0.57
`0.02
`0.19
`0.01
`0.16
`0.99
`0.47
`0.59
`0.85
`0.02
`0.08
`
`0.047
`0.056
`0.20
`0.02
`0.42
`0.008
`
`0.11
`0.45
`0.83
`0.11
`0.26
`0.057
`0.13
`0.066
`0.01
`0.44
`0.41
`0.046
`0.04
`
`0.15
`0.15
`0.12
`0.42
`1.00
`0.03
`0.03
`
`The scores of each aspect are given as median (25–75%) on a seven point scale. 7 represents best
`function and 1 represents worst function. The Mann-Whitney rank sum test was used for
`comparison between groups.
`
`time at home than the non-HPN patients (43%
`v 19%, p = 0.04), and social events and visits
`were shorter (35% v 8%, p = 0.01). In response
`to questions on body care and movement, 17%
`of the HPN patients reported needing help for
`diYcult movements—for example, getting into
`a car and getting out of the bath—compared
`with 0% in the non-HPN group (p = 0.04), and
`the HPN patients had more diYculty in main-
`taining their balance (14% v 0%, p = 0.04).
`
`Psychosocial dimension
`The HPN patients experienced a large impact
`on their psychosocial activities. As mentioned
`above, their social
`interaction was aVected
`because of problems with mobility. The
`responses to questions on social
`interaction
`showed that the HPN patients less frequently
`paid social visits to others (49% v 17%, p =
`0.004), participated less in social arrangements
`(41% v 17%, p = 0.03), and were more often
`alone (29% v 5%, p = 0.02) than the non-HPN
`patients. Concerning alertness and emotional
`behaviour, the HPN patients in general scored
`worse (higher
`score) on questions about
`emotional stability and self confidence. Some
`18% of the HPN patients felt that they were a
`nuisance to others compared with 3% of the
`non-HPN patients (p = 0.04). However, when
`asked about their prospects, the answers from
`the HPN patients were not more futile than
`those from the non-HPN patients. Some 43%
`
`of the HPN patients reported to have reduced
`sexual activity, but this did not diVer from the
`non-HPN patients (42%, p = 0.91). No
`significant diVerences for individual questions
`on communication were found between the
`two groups.
`
`Independent categories
`The HPN patients in general had greater sick-
`ness related dysfunction with regard to sleep
`and rest, but none of the diVerences in the
`answers to individual questions between the
`two groups reached statistical significance. For
`the questions on eating, 41% of the HPN
`patients reported having a reduced appetite
`compared with only 6% of
`the non-HPN
`patients (p<0.001). Only 14% of the HPN
`patients were in full time work compared with
`44% of the non-HPN patients (p = 0.004). In
`questions about home management, 59% of
`the HPN patients reported carrying out less of
`the housework compared with 33% of the non-
`HPN patients (p = 0.03) and significantly less
`did the shopping (84% v 100%, p = 0.02),
`cleaning (76% v 94%, p = 0.04), and heavy,
`demanding work at home (47% v 86%,
`p<0.001). In questions on recreation and pas-
`times, the HPN patients spent less time out
`enjoying themselves (45% v 19%, p = 0.03)
`and socialised less (43% v 11%, p = 0.003).
`They also did less physical
`training and
`exercise than the non-HPN patients (41% v
`17%, p = 0.03).
`On the 9 cm visual analogue scale measuring
`the overall feeling of quality of life, the HPN
`patients had a lower score (median (25–75%)
`4.9 (3.0–7.2) cm) than the non-HPN patients
`(median (25–75%) 6.8 (4.8–8.2) cm) (p =
`0.008).
`
`IBDQ SCORES
`Table 2 gives a comparison of the IBDQ scores
`between the HPN and non-HPN patients. The
`response options
`for each question were
`framed as a seven point scale on which 7 repre-
`sented best function and 1 represented worst
`function. Not only regarding the overall scores,
`but also in areas of systemic symptoms and
`emotional and social
`function,
`the HPN
`patients scored worse (lower score) than the
`non-HPN patients. Significance was not
`reached for overall bowel symptoms (5.2 v 5.7,
`p = 0.08).
`Table 2 also gives responses to the individual
`questions in the IBDQ. The HPN patients
`reported more episodes of loose bowel move-
`ments and abdominal pain than the non-HPN
`patients, and they had more nausea and vomit-
`ing. Systemically the HPN patients felt more
`fatigue than the non-HPN patients, and they
`tended to score worse (lower score) with regard
`to energy for everyday activities. The HPN
`patients reported having more problems sleep-
`ing than the non-HPN patients. With regard to
`emotional functions, the HPN patients felt
`more anger as a result of their bowel problem
`than the non-HPN patients, and when asked
`how satisfied, happy, or pleased they were with
`their personal life, they scored worse (lower
`score) than the non-HPN patients. None of the
`
`Page 4
`
`

`
`Jeppesen, Langholz, Mortensen
`
`B
`
`†
`
`NS
`
`Men
`
`Women
`
`†
`
`†
`
`NS
`
`Overall
`
`Bowel
`symptoms
`
`Systemic
`symptoms
`
`Emotional
`function
`
`Social
`function
`
`D
`
`NS
`
`NS
`
`<45 y
`
`>45 y
`
`NS
`
`†
`
`†
`
`Overall
`
`Bowel
`symptoms
`
`Systemic
`symptoms
`
`Emotional
`function
`
`Social
`function
`
`7 6 45
`
`23 1 0
`
`7 6 45
`
`23 1 0
`
`IBDQ score (7 ~best)
`
`IBDQ score (7 ~best)
`
`A
`
`***
`
`Men
`
`Women
`
`***
`
`**
`
`*
`
`Overall
`
`Physical
`activity
`
`Psychosocial
`activity
`
`Independent
`categories
`
`C
`
`***
`
`<45 y
`
`>45 y
`
`***
`
`***
`
`NS
`
`Overall
`
`Physical
`activity
`
`Psychosocial
`activity
`
`Independent
`categories
`
`25
`
`20
`
`15
`
`10
`
`5 0
`
`25
`
`20
`
`15
`
`10
`
`5 0
`
`848
`
`SIP score (0% ~best)
`
`SIP score (0% ~best)
`
`Figure 2 Mean sickness impact profile (SIP) scores and median inflammatory bowel disease questionnaire (IBDQ) scores according to sex (A and B)
`and age (C and D) in the patients on home parenteral nutrition (HPN). ♻2 or Fisher exact test: *p<0.05; **p<0.01, ***p<0.001. Mann-Whitney rank
`sum test: †p<0.05.
`
`diVerences in responses to individual questions
`on social function reached statistical signifi-
`cance, but an overall worse score (lower score)
`was seen in the HPN patients compared with
`non-HPN patients. No diVerences were seen
`between the two groups with regard to
`limitations in sexual activity. Some 55% of the
`HPN patients and 53% of
`the non-HPN
`patients, however, reported that their bowel
`problem had reduced their sexual activity.
`
`EFFECT OF SEX AND AGE ON SIP AND IBDQ SCORES
`To evaluate the eVect of sex and age on the SIP
`and IBDQ scores, the HPN patients were
`divided according to sex and age below and
`above 45 years. Eighteen patients were men
`and 31 women, and 23 patients were less than
`45 and 26 were more than 45.
`
`Sex
`The median age in the male and female HPN
`population was 45.4 and 46.1 years respectively
`(p = 0.55). Figure 2A, B gives the SIP and
`IBDQ scores respectively arranged by sex. The
`female HPN patients scored significantly worse
`(higher score) overall and for the physical and
`psychosocial dimensions and the independent
`categories. An analysis of the physical dimension
`showed that the female HPN patients had worse
`SIP scores (higher score) with regard to both
`ambulation and mobility (22% v 10%, p =
`0.002) and body care and movement (12% v
`6%, p = 0.002) compared with the male HPN
`patients. In the psychosocial dimension no
`significant diVerence was seen between sexes
`with regard to social interaction, but the female
`patients scored worse (higher score) in areas of
`alertness and emotional behaviour (22% v 11%,
`p = 0.009) and communication (5% v 1%, p =
`0.04) compared with the male HPN patients.
`
`With respect to the individual categories, no dif-
`ferences were seen between the sexes with
`regard to sleep and rest, eating, work or recrea-
`tion and pastimes. The female HPN patients,
`however, scored significantly worse (higher
`score) with regard to home management (30% v
`16%, p<0.001).
`When considering the 9 cm visual analogue
`scale for overall feeling of quality of life, the
`female HPN patients tended to score worse
`(lower score: median (25–75%) 4.6 (2.2–7.0)
`cm) than the male HPN patients (6.6 (4.5–7.4)
`cm) (p = 0.068).
`With regard to the IBDQ scores, the female
`HPN patients scored significantly worse (lower
`score) overall as well as
`in the systemic
`symptoms and emotional function categories.
`No diVerences could be shown for bowel symp-
`toms and social function between the sexes (fig
`2B). Analysis of the responses to the individual
`questions on bowel symptoms, however, showed
`that the female HPN patients scored worse
`(lower score) in the question on pain in the
`abdomen (3.0 v 7.0, p = 0.004) and abdominal
`bloating (5.0 v 7.0, p = 0.04). The female HPN
`patients scored significantly worse (lower score)
`in all individual questions on systemic symp-
`toms, except when asked about problems of
`weight maintenance. Looking at emotional
`function, the female HPN patients felt more
`depressed and discouraged (4.0 v 7.0, p = 0.01),
`more tearful and upset (5.5 v 7.0, p = 0.003),
`more lack of understanding from others (7.0 v
`7.0, p = 0.02), and in general less satisfied,
`happy, or pleased (4.0 v 5.0, p = 0.01).
`
`Age
`The male/female ratio in the HPN patients
`below and above the age of 45 years was 8/17
`
`Page 5
`
`

`
`B
`
`NS
`
`NS
`
`NS
`
`NS
`
`849
`
`NS
`
`Overall
`
`Bowel
`symptoms
`
`Systemic
`symptoms
`
`Emotional
`function
`
`Social
`function
`
`D
`
`NS
`
`NS
`
`NS
`
`†
`
`NS
`
`Overall
`
`Bowel
`symptoms
`
`Systemic
`symptoms
`
`Emotional
`function
`
`Social
`function
`
`Quality of life with home parenteral nutrition
`
`7 6 45
`
`23 1 0
`
`7 6 45
`
`23 1 0
`
`IBDQ score (7 ~best)
`
`IBDQ score (7 ~best)
`
`A
`
`Stoma
`
`No stoma
`
`NS
`
`NS
`
`NS
`
`NS
`
`Overall
`
`Physical
`activity
`
`Psychosocial
`activity
`
`Independent
`categories
`
`C
`
`***
`
`NS
`
`***
`
`**
`
`Overall
`
`Physical
`activity
`
`Psychosocial
`activity
`
`Independent
`categories
`
`25
`
`20
`
`15
`
`10
`
`5 0
`
`25
`
`20
`
`15
`
`10
`
`5 0
`
`SIP score (0% ~best)
`
`SIP score (0% ~best)
`
`Figure 3 Mean sickness impact profile (SIP) scores and median inflammatory bowel disease questionnaire (IBDQ) scores according to the presence or
`absence of a stoma in patients not on home parenteral nutrition (HPN) (A and B) and those on HPN (C and D). ♻2 or Fisher exact test: *p<0.05;
`**p<0.01; ***p<0.001. Mann-Whitney rank sum test: †p<0.01.
`
`and 10/16 (p = 0.85). Figure 2C, D gives a
`comparison of
`the SIP and IBDQ scores
`respectively between the younger and older
`HPN patients. The patients below the age of 45
`years scored significantly better (lower score)
`on the overall SIP score and the physical and
`psychosocial dimensions, whereas no diVer-
`ences were encountered for the independent
`category. An analysis of the categories in the
`physical dimension showed that body care and
`movement were better (lower score) in the
`younger age group (SIP score 8% v 12%, p =
`0.03), whereas the diVerences in responses to
`questions on ambulation and mobility did not
`reach statistical significance. In the psychoso-
`cial dimension, the SIP score was worse (higher
`score) with regard to alertness and emotional
`behaviour in the older HPN patients (23% v
`12%, p = 0.005). No diVerences were encoun-
`tered for social interaction and communica-
`tion. In the independent categories no diVer-
`ences were detected with regard to sleep and
`rest, eating, and recreation and pastimes
`between younger and older HPN patients, but
`the younger HPN patients did better (lower
`score) with regard to work (SIP score 74% v
`96%, p = 0.04) and home management (SIP
`score 17% v 32%, p<0.001) than the older
`patients.
`When considering the 9 cm visual analogue
`scale for overall feeling of quality of life, no dif-
`ference was seen between the younger and
`older HPN patients (median (25–75%) 6.3
`(4.4–7.3) cm v 4.7 (2.2–7.1) cm, p = 0.17).
`Concerning the IBDQ scores, the younger
`HPN patients did significantly better (higher
`score) than older HPN patients with regard to
`systemic
`symptoms
`and social
`function,
`whereas no diVerences were seen with regard to
`bowel symptoms and emotional function. The
`
`overall IBDQ score tended to be better (higher
`score) in the younger HPN patients but the
`diVerence did not reach statistical significance
`(p = 0.076). An analysis of the responses to
`individual questions on bowel symptoms and
`emotional function did not disclose any signifi-
`cant diVerences. In questions on systemic
`symptoms, the older patients scored worse
`(lower score) with regard to a feeling of energy
`(2.0 v 4.0, p = 0.03), whereas none of the dif-
`ferences in answers to the other questions
`reached statistical significance. Furthermore,
`none of
`the diVerences
`in responses
`to
`questions on social function reached statistical
`significance.
`
`EFFECT OF THE PRESENCE OF A STOMA,
`DIAGNOSIS, AND DURATION OF HPN ON SIP AND
`IBDQ SCORES
`Presence of a stoma
`To evaluate the eVect of the presence of a
`stoma on quality of
`life scores, both the
`non-HPN and HPN patients were divided into
`those with a stoma and those without. Figure
`3A, B gives a comparison of the SIP and IBDQ
`scores between the non-HPN patients with and
`without a stoma, and figure 3C, D gives the
`comparison between the HPN patients with
`and without a stoma. The median age did not
`diVer
`significantly between the non-HPN
`patients with and without a stoma (49 v 50
`years, p = 0.95), the number of men did not
`diVer significantly (10 of 19 v 11 of 17), and
`most of the patients in both groups had inflam-
`matory bowel disease (13 of 19 and 17 of 17).
`None of the non-HPN patients suVered from
`intestinal dysmotility. In these non-HPN pa-
`tients no significant diVerences were observed
`for the SIP and IBDQ scores in patients with
`and without a stoma. In the HPN patients the
`
`Page 6
`
`

`
`IBDQ score (7 ~best)
`
`IBDQ score (7 ~best)
`
`A
`
`*
`
`‡
`
`†
`
`†
`
`†
`
`*
`
`†
`
`†
`
`*
`
`NS
`
`*
`
`Overall
`
`Physical
`activity
`
`Psycosocial
`activity
`
`Independent
`categories
`
`0–2 y
`
`2–6 y
`
`>6 y
`
`C
`
`*
`
`† †
`
`NS
`
`NS
`
`*
`
`†
`
`*
`
`†
`
`25
`
`20
`
`15
`
`10
`
`5 0
`
`25
`
`20
`
`15
`
`10
`
`Overall
`
`5 0
`
`850
`
`SIP score (0% ~best)
`
`SIP score (0% ~best)
`
`Independent
`Psycosocial
`Physical
`activity
`activity
`categories
`Figure 4 Mean sickness impact profile (SIP) scores and median inflammatory bowel disease questionnaire (IBDQ) scores according to diagnosis (A and
`B) and duration of home parenteral nutrition (HPN) (C and D). IBD, patients with inflammatory bowel disease; MD+OP, patients with intestinal
`resection because of mesenteric vascular disease or complications of intra-abdominal surgery; dysmotility, patients with intestinal dysmotility. *, † and ‡
`denote significant diVerence (p<0.05) by the ♻2 or Fisher exact test.
`
`IBD
`
`MD + OP
`
`Dysmotility
`
`IBD
`
`MD + OP
`
`Dysmotility
`
`Jeppesen, Langholz, Mortensen
`
`B
`
`NS
`
`NS
`
`NS
`
`NS
`
`NS
`
`Overall
`
`Bowel
`symptoms
`
`Systemic
`symptoms
`
`Emotional
`function
`
`Social
`function
`
`D
`
`NS
`
`0–2 y
`
`2–6 y
`
`>6 y
`
`NS
`
`NS
`
`NS
`
`NS
`
`7 6 45
`
`23