© Journal of Medicine and Biomedical Sciences, ISSN: 2078-0273, August, 2010
37
DEVELOPMENT AND VALIDATION OF A STOMA - QUALITY
OF LIFE SCALE IN ARABIC FOR EGYPTIAN PATIENTS
WITH PERMANENT COLOSTOMY
Wafaa Gameel Mohamed Ali
1*
, Amira Ahmed Hassanin
1
, Zienb Abd Elatif
2
1
Lecturers of Adult Care Nursing, Faculty of Nursing, Mansoura University,
2
Assist Prof of Medical Surgical Nursing, Faculty of Nursing, Assuit University (EGYPT)
*Corresponding author: drwafaa_2005@yahoo.com
ABSTRACT
Background: Few studies have evaluated the impact of a stoma on patient quality of life because of a lack of
specific validated measures. Aim: this study documents the development and initial application of a Stoma - Quality of
Life Scale in Arabic (S-QOLS in Arabic) for measuring quality of life among Egyptian patients with permanent colostomy.
Design: A cross sectional multicentre study ’design was carried out for patients with permanent colostomy. Methods: S-
QOLS in Arabic was specifically developed by the researchers to be used in this study. The development of this scale go
through multiphases, starting with reviewing of previous scales and formulating initial questions (35 items), then
validating this scale through expertise panel and patient focus groups interview to ensure that the questions addressed
all colostomy-related issues considered important by the patients. Responses from pilot groups allowed refinement to
produce the pre final scale (30 items), then this questionnaire was administered to 371 Egyptian colostomy patients.
Reliability of scale was assessed by measuring internal consistency and test retest reliability. Construct validity was
assured through factor analysis and the final scale was produced, which contained 28-items classified into six subscales.
The six subscales included Social wellbeing, concerns related to colostomy and pouch, nutritional wellbeing, emotional
wellbeing, physical wellbeing, and sexual wellbeing. Results: The results demonstrated that the subscales within the
scale are highly internally consistent, subscales’ Cronbach alpha ranged from 0.836 to .939 and was 0.941 for the total
scale. In addition, all subscales surpassed the 0.70 criterion for test retest reliability and were positively and significantly
inter-correlated.. Conclusions: this study concluded that the S-QOLS in Arabic is a fast, valid, reliable, and reproducible
instrument for measuring aspects of quality of life important to Egyptian patients with colostomy. Further studies are
needed to further validation of the instrument. Recommendation: Use of the Stoma - Quality Of Life Scale in Arabic (S-
QOLS in Arabic) in future research may contribute to a greater understanding of the impact of stoma creation on
Egyptian patients' lives.
Key words: Scale Development, Quality of Life, Permanent Colostomy Patients
INTRODUCTION
Health-related quality of life (HR-QOL) is increasingly being regarded as an important endpoint for chronic
disease and cancer management
(1)
. As more patients are surviving longer after a diagnosis of colorectal cancer-and
many other cancers due to early detection of tumors through preventive screening and to improvements in therapy ,
health-related quality of life issues are becoming more important
(2)
. Stoma patients have a surgically created opening on
the abdomen involving parts of either the gastrointestinal or urinary tract. Colostomy involves discharging feces from the
large intestine, ileostomy from the small intestine, while urostomy means discharging urine through the surgical opening.
Due to this major change in physical appearance and bodily function, patients with stoma are challenged with a number
of quality of life (QOL) issues. In addition to the body image changes that affect sexuality, the presence of an ileostomy
can lead to nutritional complications that affect quality of life
(3)
. Also Patients who have a urostomy may experience
difficulties in coping with their stoma as a result of urine leakage that causes skin irritation or breakdown. Consequently,
the entire range of stoma operations may precipitate a variety of problems that can lead to deterioration in a person's
quality of life. So the emphasis is increasingly on the assessment of quality of life and function in these patients
(4)
.
Quality of life has been defined as “the gap between the expectations and the present situation of an individual
(5)
.
Schipper, Clinch, and PowellV, (1990)
(6)
stated that health-related quality of life represents the functional effect of an
illness and its treatment upon a patient as perceived by the patient. In other words HR-QOL encompasses perceptions of
both positive and negative aspects of physical, emotional, social, cognitive, and spiritual functioning as well as the
discomfort and symptoms produced by disease or treatment
(7)
. The medical literature abounds with articles proclaiming
the presumed negative impact that ostomies have on quality of life
(2)
. According to study by Nugent et al,
(8)
who
assessed the results of almost 1,000 patients by questionnaire, as well as the reviews of the literature by other authors,
quality of life is negatively affected by the creation of an ostomy. Ostomy function, which includes leakage, frequency of
emptying and changing, difficulty in changing, duration of change, assistance required, and the impact on lifestyle, does
not appear to be uniform from patient to patient. In addition stoma patients are vulnerable to poor psychosocial health
outcomes owing to the loss of an important bodily function and the distortion of their self-image
(9-10)
.
An understanding of the pattern of HR-QOL concerns for patients with colostomies can provide the basis for
needed clinical interventions
(1)
. In 1993, ConvaTec, a leading manufacturer of ostomy equipment, conducted a survey to
establish the training needs of enterostomal therapists in Europe. One of the main findings of this survey was that
enterostomal therapists needed a tool to help them measure patient quality of life
(11-12)
. In addition a QOL instrument for