Changes in the quality of life of adults with an ostomy during the first year after surgery as part of the Best Practice Spotlight Organisation® Programme (2024)

Abstract

The aim was to analyse changes in the perceived quality of life of patients with an ostomy during the first year after surgery at two or three follow‐ups. This is a prospective study of a cohort of 55 patients who were ostomised between June 2021 and September 2022 and cared for under the recommendations set out in the Registered Nurses' Association of Ontario® best practice guideline Supporting Adults Who Anticipate or Live with an Ostomy as part of the Best Practice Spotlight Organisation® (BPSO®) programme. The Stoma Quality of Life tool was used. A univariate analysis was performed to identify variables associated with a non‐improvement in quality of life. Variables showing p < 0.1 were included in a multivariate model. Patients with an ostomy exhibited a moderate‐to‐good perception of quality of life in both the personal and social dimensions, with no worsening over the first year. Being female (OR = 10.32) and being younger (OR = 0.89) were associated with a higher risk of no improvement in quality of life. The most frequent complications were urinary leakage (p = 0.027) and dermatitis (p = 0.052) at first follow‐up; and parastomal hernia (p = 0.009) and prolapse (p = 0.05) at third follow‐up. However, they did not lead to a worsening of quality of life, suggesting that these patients were adequately supported under the BPSO® programme.

Keywords: nursing care, ostomy, practice guideline, quality of life, self‐care

1. INTRODUCTION

The number of individuals with an ostomy is on the rise worldwide. Approximately 1 million people in the United States have urinary or faecal diversions,1 and 700 000 people in Europe live with an ostomy.2 In Spain, there are approximately 70 000 people living with an ostomy and 16 000 new ostomies are estimated to be performed each year. Of these, 60% are temporary and 40% permanent, with colostomy being the most frequent type of ostomy (55.1%), followed by ileostomy (35.2%) and urostomy (9.7%).3 Caring for these patients is a challenge for healthcare systems, as ostomy affects their physical, emotional, and social spheres, leading to self‐esteem, coping, and self‐perception problems. All this brings about changes in their health, not only because of the physical, psychological, and social ramifications, but also because patients believe that their opportunities have been limited due to the disease, its repercussions, and treatment.4 This is compounded by the occurrence of complications after surgery. A number of studies report a 70%–80% incidence of complications, and the most frequent being parastomal hernia, urinary leakage, and dermatitis.5, 6, 7 Other complications include bulging, stenosis, bowel obstruction, retraction, prolapse, and infection.8, 9, 10 Overall, this could have a negative impact on the quality of life of patients with an ostomy, as it raises questions as to whether the clinical benefit of surgery correlates with an improved perception of health.11

According to the World Health Organisation, quality of life is defined as an individual's perception of their place in existence, in the context of the culture and value system in which they live and in relation to their goals, expectations, standards, and concerns. It is a very broad and multifaceted concept that is comprehensively influenced by the subject's physical health, psychological state, level of independence, social relationships, as well as their relationship with the important aspects of their environment.12 Since quality of life is a complex, subjective, and multidimensional concept, it is crucial to identify the factors that have a direct impact on these patients' perceived quality of life, which makes measuring quality of life one of the main health indicators.4 There are various tools to measure patient quality of life; however, many of them do not specifically measure quality of life in patients with an ostomy.13 Research such as the Montreux Study developed more specific questionnaires to measure quality of life in patients with an ostomy, such as the Stoma Quality of Life Index (SQLI), which has been validated in many countries, albeit not in Spain.14 Multiple studies have used a variety of tools for ostomy patients, all of which exhibited good levels of reliability and consistency.15, 16, 17, 18 The Stoma‐Quality of Life (Stoma‐QoL) has been specifically developed and validated for individuals with elimination stomas, providing qualitative indicators that express how the stoma impacts patient quality of life and satisfaction. It has also been validated in a sample of patients in Spain.19

The most effective interventions to improve quality of life and reduce complications include the following: perioperative training for patients and their families on general and specific stoma care recommendations, encouraging self‐acceptance and self‐care; marking the stoma site prior to surgery, which leads to lower rates of peristomal dermatitis and fewer urinary leaks from the device, making it easier to dress or adapt clothing20, 21; and, in general, all interventions intended to enhance self‐care skills and promote maximum autonomy among these patients, which improves their satisfaction.22

The two hospitals participating in this study are part of the network of centres included in the Best Practice Spotlight Organisation (BPSO)® Programme. This is an international programme, widely disseminated in Spain, which aims to implement the best practice guidelines (BPGs) issued by the Registered Nurses' Association of Ontario (RNAO)®.23 It is within this framework that both hospitals have implemented the BGP Supporting Adults Who Anticipate or Live with an Ostomy, which recognises the effectiveness of interventions that improve the quality of care. This guideline focuses on providing stoma therapy nurses with evidence‐based recommendations, including the following interventions: comprehensive patient assessment and preoperative education for patients and their families; performing preoperative stoma site marking; immediate postoperative education regarding stoma care and monitoring potential early stoma and peristomal skin complications; providing postoperative education upon discharge and ensuring the acquisition of self‐care skills; scheduling three follow‐ups during the first year; and monitoring of complications and patient quality of life.24

For these reasons, we analysed the quality of life of ostomy patients seen in the stoma therapy practice within the framework of the BPSO® programme and following the recommendations of the RNAO® BPG Supporting adults who anticipate or live with an ostomy. Our objectives were to: (1) analyse changes in perceived quality of life of adults with an ostomy during the first year after surgery and the factors associated with such changes within the framework of the BPSO® programme; (2) describe the most frequent complications and their influence on quality of life; and (3) identify potential changes in the different dimensions of quality of life from a gender perspective.

2. METHODS

This is a prospective, descriptive study of a cohort of adult patients who underwent gastrointestinal or urological surgery requiring an elective or urgent ostomy. All patients were assessed by two stoma therapy nurses in at least two of the three scheduled follow‐ups during the first year after ostomy. Patients were treated at two hospitals, a tertiary‐level hospital and a district hospital, both part of the public health network of Castile & León (Spain), between June 2021 and September 2022. The following variables were analysed: sociodemographic variables (age, sex, level of education, employment status, and living situation); variables regarding the degree of dependence when carrying out activities of daily living (ADLs); surgical variables (days with the stoma, urgent or elective procedure, marking of the stoma site, temporary or permanent stoma); variables regarding the type of ostomy: gastrointestinal (colostomy or ileostomy) or urological (urostomy); variables regarding autonomy in stoma care (whether the patient is able to empty or change the pouch independently); and occurrence of complications (stenosis, oedema, prolapse, parastomal hernia, retraction, dermatitis, dehiscence, urinary leaks, etc.). The Barthel index was one of the measurement tools used, which assesses the degree of dependence by measuring the individual's capacity to carry out 10 basic ADLs, producing a quantitative estimate of their degrees of frailty and dependence. The ADLs included in this index are: eating; transferring between chair and bed; personal grooming (toilet use, bathing/showering); moving around (walking on a smooth surface or in a wheelchair); going up/downstairs; dressing/undressing; faecal and urine control. These activities are scored in different ways and can be assigned 0, 5, 10, or 15 points. The overall score can range from 0 (completely dependent) to 100 points (completely independent).25 Perceived quality of life was measured using the validated Spanish version of the Stoma Quality of Life (Stoma‐QoL) questionnaire. This questionnaire consists of 20 questions exploring two dimensions of quality of life: personal factors and social factors. In the validation process of the Spanish version, structural equation modelling suggested eliminating two items for an adequate model fit, resulting in 18 items. The personal dimension is covered by items 1, 2, 3, 4, 5, 6, 7, 9, and 10 (with a maximum of 36 points) and the social dimension is covered by items 8, 11, 12, 13, 14, 15, 16, 17, and 18 (with a maximum of 36 points). The reliability level of all 18 items is 0.861 (Cronbach's α). The survey provides qualitative indicators of the impact of the stoma on patient quality of life. The questions are scored on a 4‐point Likert scale ranging from 1 to 4. Response options are: never (4 points), rarely (3 points), sometimes (2 points), and always (1 point). The maximum total score is 72. Quality of life would be considered good between 51 and 72 points, moderate between 23 and 50 points, and poor between 18 and 22 points.19

Within the framework of RNAO's BPG Supporting adults who anticipate or live with an ostomy,24 patients were assessed at the stoma therapy clinic at three follow‐ups: the first follow‐up took place within the first 45 days after ostomy; the second follow‐up took place between day 46 and day 200; and the third follow‐up took place between day 201 and day 380 after ostomy. All patients were assessed by the same two stoma therapy nurses, which minimised assessment variability, especially in the case of complications, where the existing protocol, derived from the BPG, was applied in the unit. During follow‐ups, the stoma nurses provided patients with the Stoma‐QoL questionnaire for self‐completion. The data were collected using the Research Electronic Data Capture (REDcap) software, available at the hospital, which complies with current European and Spanish data protection regulations.

The necessary sample size was estimated to be 43 patients to achieve a 95% confidence level, a 3% level of accuracy, a 10% standard deviation, and a 0% replacement rate. Quantitative variables were expressed as means and standard deviations, and qualitative variables as frequency distributions. The Kolmogorov–Smirnov test was used to verify normality. Pearson's chi‐squared test was used to analyse associations between qualitative variables. In case the number of cells with expected values below 5 was higher than 20%, Fisher's exact test or the likelihood‐ratio test was used for variables with more than two categories. Quantitative values were compared using Student's t‐test. A univariate logistic regression model was employed to identify patients' non‐improvement. Variables identified to be statistically significant at the 0.1 level were entered into a multivariate regression model. The data were analysed using SPSS software for Windows (version 26.0) from IBM. The statistical significance threshold was set at p < 0.05.

2.1. Ethical considerations

The researchers confirm that they adhere to the bioethical standards enshrined in the Helsinki Declaration, the Oviedo Convention on Human Rights and Biomedicine, Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 (GDPR), and Spanish Organic Law 3/2018 of 5 December, on Personal Data Protection and Guarantee of Digital Rights. The study was approved by the Ethics Committee for Research with medicinal products (ECRmp) for the Valladolid Este Healthcare Area under the code: PI‐GR‐21‐2361.

3. RESULTS

The sample analysed included n = 55 patients, whose mean age was 71.3 (SD = 9.8) years, with 72.7% (n = 40) being male and 27.3% (n = 15) being female.

The sociodemographic characteristics of the sample and the clinical variables regarding the surgical procedures performed are shown in Table1. Notably, 81.8% (n = 45) of patients had their stoma site marked prior to surgery, which was elective. All patients were followed up at least twice, except for 17 patients, who were followed up three times. Patient ability to perform ADLs, as measured by the Barthel index, varied throughout the first year after ostomy. At the first follow‐up, patients obtained a mean score of 81.73 (SD = 16.67) points, then 85.31 (SD = 2.0) points at the second follow‐up, and finally, 75.59 (SD = 6.87) points at the third follow‐up, meaning that all patients were considered moderately dependent. Analysis of familiarity when operating the device showed that 70.4% (n = 38) could adjust the clip; 68.5% (n = 37) could empty the pouch, and 58.5% (n = 31) could change the pouch independently 1 month after the procedure. In the remaining cases, care was provided by the primary caregiver, who had been trained to do so.

TABLE 1.

Sociodemographic and clinical characteristics of the sample (n = 55).

		N	Valid %
Sex	Male	40	72.7
Sex	Female	15	27.3
Level of education	No education	2	3.8
	Primary education	30	56.6
	Secondary education/Vocational training	10	18.9
	University education	11	20.8
Employment status	Employed	11	20.4
Employment status	Retired	43	79.6
Lives alone	Yes	18	32.7
Device handling familiarity	Adjusting the clip	38	70.4
	Emptying the pouch	37	68.5
	Changing the pouch	31	58.5
Stoma site marking	No	10	18.2
Stoma site marking	Yes	45	81.8
Surgical procedure	Urgent	10	18.2
Surgical procedure	Elective	45	81.8
Type of ostomy	Colostomy	35	63.6
	Ileostomy	10	18.2
	Urostomy	10	18.2
Permanent	No	21	38.2
Permanent	Yes	34	61.8
Surgical technique	End	40	72.7
	Loop	7	12.7
	Other	8	14.5

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TABLE 2.

Quality of life mean values (overall and by dimensions) as measured with the Stoma‐QoL tool at the three follow‐ups.

Stoma‐QoL score	Follow‐up	Mean	Standard deviation	95% confidence interval for the mean		p‐value
Stoma‐QoL score	Follow‐up	Mean	Standard deviation	Lower limit	Upper limit	p‐value
Overall quality of life	1st	50.55	12.35	47.21	53.88	0.267
	2nd	53.93	9.77	51.28	56.57
	3rd	53.41	11.66	47.42	59.41
Personal dimension	1st	23.56	5.96	21.95	25.18	0.163
	2nd	25.47	5.15	24.08	26.86
	3rd	25.71	6.70	22.26	29.15
Social dimension	1st	26.98	7.25	25.02	28.94	0.481
	2nd	28.45	5.57	26.95	29.96
	3rd	27.71	5.67	24.79	30.62

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Analysing the mean scores for the 18 items on the Stoma QoL questionnaire both independently and their variations throughout the follow‐ups, it was observed that only two of them had shown statistically significant improvements. Item 7, I feel tired during the day (p < 0.001), improved in the three follow‐ups. Item 9, I sleep badly during the night, improved significantly only in the first 6 months, and then remained stable (p = 0.047). Item 17, I feel lonely even when I am with other people, was very close to statistical significance, improving at all three follow‐ups (p = 0.052). None of the items showed significant worsening over the follow‐ups. The items that obtained the lowest mean scores—the overall means of the three follow‐ups—and were, therefore, the poorest rated were items 2, I worry that the pouch will loosen (mean = 1.98; SD = 1.03), and 3, I feel the need to know where the nearest toilet is (mean = 2.39; SD = 1.14). Items 16, My stoma makes it difficult for me to be with other people (mean = 3.36; SD = 0.94) and 17, I feel lonely even when I am with other people (mean = 3.61; SD = 0.74) were the top rated with the highest mean scores (Table3). A detailed analysis using multiple comparisons of the two items that were found to be statistically significant showed that scores for item 7, I feel tired during the day, improved significantly at all follow‐ups—from the first to the second (p > 0.001) and from the second to the third (p > 0.002). Item 9, I sleep badly during the night, only improved from the first to the second follow‐up (p = 0.02).

TABLE 3.

Mean Stoma‐QoL scores for each of the items at the three follow‐ups.

Items	FU	N	Mean	SD	95% confidence interval for the mean		p‐value
Items	FU	N	Mean	SD	Lower limit	Upper limit	p‐value
1. I become anxious when the pouch is full.	1	55	2.78	0.97	2.52	3.05	0.826
	2	55	2.84	0.87	2.60	3.07
	3	17	2.94	1.03	2.41	3.47
	Total	127	2.83	0.93	2.66	2.99
2. I worry that the pouch will loosen.	1	55	1.95	0.98	1.68	2.21	0.933
	2	55	2.02	1.06	1.73	2.31
	3	17	2.00	1.12	1.43	2.57
	Total	127	1.98	1.03	1.80	2.17
3. I feel the need to know where the nearest toilet is.	1	55	2.24	1.12	1.93	2.54	0.435
	2	55	2.49	1.14	2.18	2.80
	3	17	2.53	1.23	1.90	3.16
	Total	127	2.39	1.14	2.19	2.59
4. I worry that the pouch may smell.	1	55	2.42	1.25	2.08	2.76	0.374
	2	55	2.64	1.02	2.36	2.91
	3	17	2.82	1.01	2.30	3.35
	Total	127	2.57	1.13	2.37	2.77
5. I worry about noises from the stoma.	1	55	2.95	1.18	2.63	3.26	0.843
	2	55	2.91	0.96	2.65	3.17
	3	17	3.06	0.89	2.60	3.52
	Total	127	2.94	1.05	2.76	3.13
6. My stoma pouch limits the choice of clothes that I can wear.	1	55	2.58	1.23	2.25	2.91	0.731
	2	55	2.62	1.16	2.30	2.93
	3	17	2.35	1.37	1.65	3.06
	Total	127	2.57	1.21	2.35	2.78
7. I feel tired during the day.	1	55	2.53	1.08	2.23	2.82	<0.001
	2	55	3,22	0.89	2.98	3.46
	3	17	3.41	1.01	2.90	3.93
	Total	127	2.94	1.06	2.76	3.13
8. My stoma makes me feel sexually unattractive.	1	54	2.76	1.21	2.43	3.09	0.932
	2	55	2.71	1.10	2.41	3.01
	3	17	2.82	1.07	2.27	3.38
	Total	126	2.75	1.14	2.55	2.95
9. I sleep badly during the night.	1	55	2.85	1.06	2.57	3.14	0.047
	2	55	3.29	0.91	3.04	3.54
	3	17	3.29	0.84	2.86	3.73
	Total	127	3.10	0.99	2.93	3.28
10. I worry that the pouch rustles.	1	55	3.27	1.06	2.99	3.56	0.577
	2	55	3.45	0.81	3.23	3.67
	3	17	3.29	0,92	2.82	3.77
	Total	127	3.35	0.94	3.19	3.52
11. I feel embarrassed about my body because of my stoma.	1	55	2.85	1.11	2.55	3.16	0.49
	2	55	3.05	0.87	2.82	3.29
	3	17	2.82	1.01	2.30	3.35
	Total	127	2.94	0.99	2.76	3.11
12. It would be difficult for me to stay away from home overnight.	1	55	2.89	1.15	2.58	3.20	0.648
	2	55	2.95	1.11	2.64	3.25
	3	17	2.65	1.32	1.97	3.33
	Total	127	2.88	1.15	2.68	3.08
13. It is difficult to hide the fact that I wear a pouch.	1	55	2.87	1.03	2.59	3.15	0.628
	2	55	3.05	0.91	2.81	3.30
	3	17	2.94	1.08	2.38	3.50
	Total	127	2.96	0.98	2.79	3.13
14. I worry that my condition is a burden to people close to me.	1	55	2.64	1.18	2.32	2.95	0.763
	2	55	2.76	1.04	2.48	3.04
	3	17	2.82	1.13	2.24	3.41
	Total	127	2.72	1.10	2.52	2.91
15. I avoid close physical contact with my friends.	1	55	3.11	1.13	2.80	3.42	0.379
	2	55	3.33	0,88	3.09	3.57
	3	17	3.00	1.00	2.49	3.51
	Total	127	3.19	1.01	3.01	3.37
16. My stoma makes it difficult for me to be with other people.	1	55	3.31	0.96	3.05	3.57	0.745
	2	55	3.44	0.95	3.18	3.70
	3	17	3.29	0.92	2.82	3.77
	Total	127	3.36	0.95	3.20	3.53
17. I feel lonely even when I am with other people.	1	55	3.47	0.84	3.25	3.70	0.052
	2	55	3.67	0.69	3.48	3.86
	3	17	3.88	0.48	3.63	4.13
	Total	127	3.61	07.5	3.48	3.75
18. I worry that my family feels awkward around me.	1	55	3.13	1.07	2.84	3.42	0.148
	2	55	3.49	0.88	3.25	3.73
	3	17	3.47	0.94	2.99	3.96
	Total	127	3.33	0.98	3.16	3.50

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Abbreviations: FU, follow‐up; SD, standard deviation.

In addition, a frequency table was created to identify which aspects patients were most concerned about by considering those that were rated as ‘always’ or ‘sometimes’ in more than 25% of the questionnaire responses. It was observed that items relating to the device scored the highest in terms of frequency: item 1, I become anxious when the pouch is full (29.95%); item 2, I worry that the pouch will loosen (43.3%); item 3, I feel the need to know where the nearest toilet is (29.9%); item 6, My stoma pouch limits the choice of clothes that I can wear (27.6%); item 7, I feel tired during the day (25.2%), and item 9, I sleep badly during the night (25.2%), all of them pertaining to the personal dimension (Table4).

TABLE 4.

Frequency of responses to each of the Stoma‐QoL items.

	Always % (n)	Sometimes % (n)	Rarely % (n)	Not at all % (n)
1. I become anxious when the pouch is full	7.9 (10)	29.9 (38)	33.9 (43)	28.3 (36)
2. I worry that the pouch will loosen	43.3 (55)	25.2 (32)	21.3 (27)	10.2 (13)
3. I feel the need to know where the nearest toilet is	29.9 (38)	24.4 (31)	22.8 (29)	22.8 (29)
4. I worry that the pouch may smell	23.6 (30)	23.6 (30)	25.2 (32)	27.6 (35)
5. I worry about noises from the stoma	13.4 (17)	17.3 (22)	30.7 (39)	38.6 (49)
6. My stoma pouch limits the choice of clothes that I can wear	27.6 (35)	21.3 (27)	18.1 (23)	33.1 (42)
7. I feel tired during the day	11.0 (14)	25.2 (32)	22.0 (28)	41.7 (53)
8. My stoma makes me feel sexually unattractive.	19.0 (24)	23.0 (29)	22.2 (28)	35.7 (45)
9. I sleep badly during the night.	6.3 (8)	25.2 (32)	20.5 (26)	48.0 (61)
10. I worry that the pouch rustles	7.1 (9)	11.0 (14)	21.3 (27)	60.6 (77)
11. I feel embarrassed about my body because of my stoma	9.4 (12)	24.4 (31)	29.1 (37)	37.0 (47)
12. It would be difficult for me to stay away from home overnight	18.9 (24)	15.7 (20)	23.6 (30)	41.7 (53)
13. It is difficult to hide the fact that I wear a pouch	8.7 (11)	24.4 (31)	29.1 (37)	37.8 (48)
14. I worry that my condition is a burden to people close to me	18.1 (23)	24.4 (31)	25.2 (32)	32.3 (41)
15. I avoid close physical contact with my friends	10.2 (13)	12.6 (16)	25.2 (32)	52.0 (66)
16. My stoma makes it difficult for me to be with other people	7.1 (9)	11.8 (15)	18.9 (24)	62.2 (79)
17. I feel lonely even when I am with other people	2.4 (3)	8.7 (11)	14.2 (18)	74.8 (95)
18. I worry that my family feels awkward around me	6.3 (8)	18.1 (23)	11.8 (15)	63.8 (81)

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Regarding the analysis of complications during the study period, those that occurred in a statistically significant or close to significant manner were urinary leakage (p = 0.027) and dermatitis (p = 0.052) in the first follow‐up, and parastomal hernia (p = 0.009) and prolapse (p = 0.05) in the third follow‐up, compared to the other follow‐ups (Table5).

TABLE 5.

Frequency of complications occurring in the three follow‐ups.

		Follow‐up						p‐value
		1st		2nd		3rd
		n	%	n	%	n	%
Stenosis	No	51	92.7	51	92.7	17	100.0	0.304
Stenosis	Yes	4	7.3	4	7.3	0	0.0	0.304
Oedema	No	52	98.1	54	98.2	15	100.0	0.769
Oedema	Yes	1	1.9	1	1.8	0	0.0	0.769
Prolapse	No	53	96.4	52	94.5	13	76.5	0.05
Prolapse	Yes	2	3.6	3	5.5	4	23.5	0.05
Parastomal hernia	No	53	96.4	45	83.3	12	70.6	0.009
Parastomal hernia	Yes	2	3.6	9	16.7	5	29.4	0.009
Retraction	No	49	96.1	50	90.9	17	100.0	0.189
Retraction	Yes	2	3.9	5	9.1	0	0.0	0.189
Urinary leakage	No	50	90.9	55	100.0	16	94.1	0.027
Urinary leakage	Yes	5	9.1	0	0.0	1	5.9	0.027
Dermatitis	No	44	81.5	47	88.7	16	100.0	0.052
Dermatitis	Yes	10	18.5	6	11.3	0	0.0	0.052

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A univariate analysis was performed to assess variables that could have a statistically significant, or close to significant, influence on non‐improvement of quality of life (Table6). Subsequently, variables that were found to be statistically significant (p < 0.1) were included in a multivariate model. This analysis showed a higher risk of deteriorating quality of life in women compared to men (OR = 10.32) and a lower risk with increasing age (OR = 0.89).

TABLE 6.

Univariate analysis of variables that may influence quality of life.

		p‐value	OR	95% CI for OR
		p‐value	OR	Lower	Upper
Ability to change the stoma pouch independently (yes vs. no)		0.12	2.84	0.77	10.45
Sex (female vs. male)		0.09	3.01	0.86	10.59
Age		0.07	0.94	0.89	1.01
Barthel score		0.96	1.00	0.96	1.03
Has a partner (yes vs. no)		0.56	0.70	0.21	2.31
Lives alone (yes vs. no)		0.07	3.20	0.92	11.11
Has caregiver (yes vs. no)		0.29	0.46	0.11	1.94
Level of education	University education (Ref)*	0.47
	No education	1.00	0.00	0.00
	Primary education	0.41	0.53	0.12	2.37
	Secondary education/Vocational training	0.53	1.75	0.31	10.02
Employment status (employed vs. retired)		0.58	1.48	0.36	5.97
Surgical procedure (urgent vs. elective)		0.41	1.83	0.44	7.64
Permanent (yes vs. no)		0.91	0.93	0.28	3.11
Complications (yes vs. no)		0.93	0.95	0.30	3.04
Ability to adjust the bag clip or discharge tube if available (yes vs. no)		0.26	2.25	0.54	9.35
Ability to empty the bag independently (yes vs. no)		0.20	2.53	0.61	10.44
Surgical technique	Other (Ref)*	0.61
	End	0.68	1.44	0.26	8.16
	Loop	0.61	0.50	0.04	7.10
Type of stoma	Ileostomy (Ref)*	0.78
	Colostomy	0.93	1.07	0.23	4.94
	Urostomy	0.61	0.58	0.07	4.56

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Note: (Ref)* = reference value.

Comparing males versus females, age was significantly higher (p = 0.05) among females (mean age = 76.50) vs. males (mean age = 70.61). Regarding perceived quality of life, women obtained poorer results on both the overall score and on the scores for each of the two dimensions, with no statistical significance (Table7).

TABLE 7.

Mean quality of life scores (overall and by dimensions) as measured with the Stoma‐QoL tool, by sex.

Stoma QoL score	Sex				p‐value
	Male		Female
	Mean	Standard deviation	Mean	Standard deviation
Overall	53.74	9.05	49.51	11.55	0.153
Personal dimension	25.38	4.60	23.08	5.18	0.112
Social dimension	28.36	4.84	26.43	6.89	0.241

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Analysing the different follow‐ups and each of the items, it was observed that women reported feeling more tired than men in the first follow‐up (p = 0.035); in the second follow‐up, women expressed becoming more anxious when the pouch is full (p = 0.026) and more worried than men that the pouch will loosen (p = 0.005). All these items belong to the personal dimension. At the third follow‐up, women stated that they avoided physical contact with their friends (p = 0.001) and that their stomas made it difficult for them to be with other people (p = 0.015), items linked to the social dimension.

4. DISCUSSION

Our findings showed a moderately aged, predominantly male, and moderately dependent population. This is in line with other studies, as this circumstance is common: as life expectancy increases, ostomies are increasingly performed on older patients, and more often in men.26 This might explain why more than half of the recruited patients failed to use the device autonomously and had difficulties in self‐management, as reported in other studies.27, 28 However, this has not resulted in a deterioration of their quality of life. Perceived quality of life scores reported by the study patients throughout the various follow‐ups ranged from moderate to good, in terms of overall means and in the two dimensions, personal and social, showing a positive trend. These results are consistent with other studies.29, 30, 31 One explanation for this may be that the physical and psychological concerns of these patients were minimised by the knowledge that a support nurse was there to help them with their care demands and any complications that might arise throughout the process. In addition, according to RNAO's BPG Supporting adults who anticipate or live with an ostomy, the stoma care provided by the stoma therapy nurse at each of the follow‐ups reinforces the training in the handling of the device, and providing standardised educational and informative reminders during the perioperative period up to 1 year of outpatient follow‐up is a fundamental pillar of effective psychosocial coping (RNAO, 2019a). Therefore, there is no doubt that nursing interventions are necessary to reduce complications, to acquire self‐care skills, and to achieve a certain degree of independence, all of which help patients and their families to accept and adjust to the new situation and, consequently, to attain a better quality of life.11, 22, 32 Another nursing intervention influencing patient quality of life, as reported in numerous studies, is marking the stoma site. This elective pre‐surgical intervention reduces the number of complications and has a positive impact on quality of life.20, 21, 33 In our study sample, a high proportion of patients had had their stoma sites marked, as these were elective procedures, which was a favourable factor in reducing complications, thus increasing perceived quality of life. Lower frequencies of complications were reported than in other published studies, where a higher number of complications had a negative impact on perceived quality of life.7, 34, 35

In this study, urinary leakage and dermatitis were most prevalent at the first follow‐up (between days 30 and 45), while parastomal hernia and prolapse were more prevalent at the third follow‐up (close to 1 year after surgery). However, these did not affect patients' perceived quality of life. In addition, patients might have been less affected by the functional impairment and physical alterations experienced after surgery because they were unemployed and had other prospects for the future.

The aspects of greatest concern to the patients were those related to the safety of the device, such as worrying that the pouch will loosen, and becoming anxious when the pouch is full. Another concern was needing to know where the nearest toilet is or the limited choice of clothes that they can wear because of the pouch. These aspects are closer to the personal rather than the social dimension—a finding that is consistent with other European studies—and were more prevalent among women.36 However, it is important to note that these aspects improved the most from the second to the third follow‐up, which highlights the personalised work carried out by the nurses in providing education on the safety of the pouch seal—which is key to avoiding urinary leaks as well as irritation of the peristomal skin— and allowing patients to return progressively to their daily routine, as reported in other studies.35 Items related to sleeping badly during the night and feeling tired during the day were the most significantly improved during the three follow‐ups, which could be due to the overall clinical improvement of the patients as they physically and emotionally adapted to their new reality. This is in line with other studies reporting similar results.22

Our findings regarding non‐improvement in quality of life are similar to those of other studies, in which being younger and being female are risk factors for the deterioration or non‐improvement of perceived quality of life.37 Women reported lower quality of life scores than men, which may be accounted for by the fact that physical and psychological concerns differ greatly between women and men. The poorest scores were observed in the personal dimension: patients reported feeling more tired at the first follow‐up, they were more worried about pouch‐related issues from day 45 after the ostomy, and they were more concerned about psychosocial aspects 1 year on. Men scored higher on both dimensions, albeit without statistical significance. This could be explained by the change of body image in women, which deviates from culturally established patterns and can paint this entire process in a negative light, both in terms of self‐perception and social relations. By contrast, men do not prioritise body self‐perception as much as social interaction, obtaining better overall quality of life scores.

The main limitation of this study is that it is limited to a specific healthcare area, which makes it difficult to generalise the results. Moreover, as quality of life is a subjective, multi‐factor concept, there may be other factors that have not been taken into consideration.

In conclusion, patients with an ostomy, who were mostly moderately elderly and dependent in performing ADLs, perceived their quality of life to be moderate‐to‐good in the personal and social dimensions, with no deterioration being observed in the first year after ostomy. They reported greater needs in aspects linked to self‐management and control of the device. The complications experienced by the patients did not significantly worsen their perceived quality of life. Being female and being younger were associated with a higher risk of no improvement in perceived quality of life. Taking the gender perspective into consideration, women showed greater needs than men in the personal dimension at earlier stages, and in the social dimension at later stages.

Our results regarding changes in complications and perceived quality of life suggest adequate support by the stoma therapy nurses, which was based on the interventions carried out within the framework of the implementation of RNAO®'s BPG. It would be beneficial to design new strategies to improve these results and assess their effectiveness in future studies.

FUNDING INFORMATION

The study was funded by the Castile & León Regional Health Management Board as per resolution of 7 June 2021 under reference code GRS2365A/21.

CONFLICT OF INTEREST STATEMENT

The authors have no conflicts of interest to disclose.

ACKNOWLEDGEMENTS

The authors would like to thank the stoma therapy nurses at the two participating hospitals for their follow‐up of patients who anticipate or live with an ostomy.

Martín‐Gil B, Rivas‐González N, Santos‐Boya T, et al. Changes in the quality of life of adults with an ostomy during the first year after surgery as part of the Best Practice Spotlight Organisation® Programme. Int Wound J. 2024;21(3):e14456. doi: 10.1111/iwj.14456

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.