GLOBAL STOMA CARE CHALLENGES: A UNITED APPROACH

Transcription

1 GLOBAL STOMA CARE CHALLENGES: A UNITED APPROACH Original presentation: Yes (x) No Authors: Stoma care specialist Stoma care specialist Beverley Colton, Bristol Royal Infirmary, United Bristol Hospital Trust Fran Mc Kenzie, Glasgow Royal Infirmary, North Glasgow University Hospital, NHS Trust Stoma care specialist Stoma care specialist Stoma care specialist Janet Sheldon, Royal Bournemouth and Christchurch NHS Trust, Amanda Smith, Salford Royal Hospitals NHS Trust Albertus Theodoor Tappe, Royal Hallamshire Hospital, Sheffield Teaching Hospitals, NHS Trust Stoma care specialist Stoma care specialist Doreen Woolley, South Manchester NHS Primary Care Trust Vicki Ingram, Glasgow Royal Infirmary, North Glasgow University Hospital, NHS Trust Author responsible for correspondence: Amanda Smith, Salford Royal Hospital 1

2 Introduction The role of the clinical nurse specialist (CNS) is multi faceted. At its core is the aim of providing a specialized expert service to each individual patient. Pearson and Peels (2002) 8, describe clinical expertise as being the most fundamental part of the CNS role coupled with the primary roles of consultant, educator and researcher. The enterostomal therapist (ET) was one of the first clinical nurse specialist roles created in 1969 (Saunders 1974) 10. ETs often work in isolation striving to maintain and improve the care they give to their client group. There are many different types of assessment and documentation tools available for ETs to assess patients and record interventions. These are often developed locally by groups of ETs as described by Metcalf 7 in 2000, or the ET may choose to utilize a tool designed by a stoma product manufacturing company. Whatever the choice, the importance of taking a detailed patient history is paramount. ETs require an in-depth knowledge and understanding of the patient s condition and their needs, both for nursing care and psychological support. The aim of this project was to develop an international patient record document that could be used globally by ETs to gather complete data on individual patients. The purpose of this was to identify short and long term consequences of stoma formation with the objective to recommend improvements in practice. The objective was first to develop a history taking and assessment form to identify potential problems arising before and after stoma formation that may have an impact on the patient s care and care outcomes. It was considered important to develop a form that was easily understandable by all nationalities and easy to use. The authors were particularly aware of countries where the specialism of enterostomal therapy was in development, and hoped that this documentation would help support the nurses in these nations to achieve and maintain a high quality of care for their patients. 2

3 Background The project group consisted of experienced and dedicated ET s from different countries, different practices, and different educational backgrounds but with the same will to improve. The initial objective was to create an international history taking /assessment form (HTF) to gather complete relevant data in order to identify short and long term consequences with the purpose to recommend improvements. The form had to be understandable and easy to use. It was divided into the following sections: Physical status Family history Stoma siting Psychological status Social/cultural status Information given to the patient For a period of two years the HTF was formally tested, evaluated and modified both in content and format to ensure consistency of questions asked when the history was taken. This was both a challenge and at times a struggle and therefore guidelines were developed to enable the HTF to be used uniformly by all participants in the project. ( Marek KD, 1997) 6 From evaluation of the HTF it was decided to divide the form into two sections, a HTF and an enhanced Follow-up form. Development of the Follow-up form enabled the ET to identify ostomy related Quality of Life (QOL) issues/concerns and physical symptoms occurring in the first year following surgery (Fig.1). To again ensure uniformity an Observation Index/ tool was devised, so that ostomy problems and their frequency could be identified and necessary intervention taken. Hypothesis Use of a standardized observation index and a Follow-up form enables ET nurses to have increased awareness of individual patient problems and to provide early detection and appropriate intervention. Aim To identify ostomy related problems occurring in the participating countries within the first year following surgery using a standardized observation index and a Follow-up form. 3

4 Objectives To study the short and long term consequences arising from ostomy surgery. To compare the incidence of problems occurring in the different participating countries. To identify the time span when these problems occur. To recommend changes based on analyses of the findings in order to improve the Quality of Life for the ostomates and the quality of stoma care. Methodology Over 13 months a prospective international multi centre study was undertaken to test the Follow-up form and the Observation index, developed by the group. In order to raise the number of patients for statistical credibility ET s from Japan, Hungary and Poland joined the ETs from England, Scotland, Denmark, Sweden, Norway and Holland, allowing sharing of commonalities and experiences reaching across Europe to the Far East. In total 28 ETs participated in the study. From a set date each ET was asked to enter10 consecutive patients. Some of the 28 nurses entered more than 10, others less. The total number of patients involved in this study was 252. Each patient was identified by a number, assessed at specific intervals and the findings were coded by the use of the Observation Index (Attachment 2) and recorded on the Follow up form (Fig 1). The categories on the Follow-up form were: Stoma status Skin condition Output/ Consistency Psychological Social Sexuality Ostomy Forum Follow up Form Time span Stoma Skin Output Psych. Social Sexual Pt. No. Type Weeks Obs. Cause Obs. Cause Obs. Cause Obs. Obs. Obs. Closed Died 1 ` `3-6 month `6-12 month Figure 1 4

5 Each of these categories were subdivided and coded within the Observation index (Attachment 2). Patients were monitored for a maximum of one year within the time span intervals shown in Figure 1. In monitoring the individual patient the ETs recorded the cause in connection with the observations of skin, stoma and output. The cause was either medical or personal to the individual, for example. a medical skin problem could be the predisposing factor of eczema. A personal cause of high output from a stoma could be due to inappropriate nutritional intake. The data was analysed by a research company using their own data processing system called TabSys. Result The study population consisted of patients that had undergone surgery resulting in the following types of stomas, colostomies 59%, ileostomies 30% and urostomies 11%. Of the patients with a colostomy, 28% were temporary stomas and 72% of the ileostomies were temporary stomas. At the end of the study 9% had died. The following results highlight the most significant findings related to three of the categories used in the Follow up form. 5

6 Skin status At each visit the ET examined the peristomal skin and recorded the findings. Most complications were found to occur within 6 weeks following surgery (Fig.2). After 6 weeks there is a reduction in skin complications especially erythema and maceration. However patients continue to present with skin problems at 12 months. This highlights the importance of ET follow up of peristomal skin following stoma surgery (Lyon and Smith 2001) 5 (Black P 1994) 3. Skin observations during visits Figure w 3-6 w 6-12 w 3-6 m 6-12 m Skin observations during visits Normal Erythema Macarated Eroded Ulcerated Irritated Predisp Other 0% 20% 40% 60% 80% 100% 120% Figure 2 Skin observations at 2-6 weeks (Fig.3) separated into the participating countries, illustrate that Sweden and Poland has the best outcomes at that stage. Skin observations at 2-6 weeks 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Denmark Sweden Norway Holland UK Poland Hungaria Japan Number: 20,27,23,25, 78,13,18,32 Normal Macerated Ulcerated Predisposing factors Erythema Eroded Irritated Figure 3 6

7 Psychological status In the psychological results the observation low in spirit falls over the course of the visits (Fig. 4). Worry about diagnosis tend to grow again after 3-6 months. Pringle and Swann (2001) 9 suggests this may occur because reality is setting in with the possibility of further intervention, adjuvant therapy or surgery. Psychological observations during visits Psychological observations during visits Low in spirits Previous emotional problems Worry about diagnosis Body image/perception 0% 20% 40% 60% 80% 100% 0-2 w 3-6 w 6-12 w 3-6 m 6-12 m Figure 4 The authors note the increase in the Body Image / perception issues at 3-6 months (Fig.4). The physical recovery from the trauma of surgery is in most cases over. Having to cope with the psychological issues now emerging might be a severe set back to QOL. When comparing the psychological observation, body image versus type of stoma (Fig.5) it is noted that at 3-6 months patients with a temporary stoma appear to have more psychological problems.. This may be due to increased anxiety of further or delayed treatment or even their long-term outcome. It would be expected that they are anticipating reversal of the stoma As suggested by Allison (1994) 1 ; a patient being told that a stoma is temporary may have negative implications with regard to adaptation and acceptance of the stoma. 7

8 Psychological observations 3-6 months versus type of stoma 0% 20% 40% 60% 80% 100% Colostomy Ileostomy Urostomy Low in spirits Worry about diagnosis Number : 113, 54, 25 Prev. emotional problems Body image/perceptions Figure 5 8

9 Social status The data reveals that at 6 12 months ileostomy patients have resumed normal social activities whereas more colostomy and urostomy patients have become socially isolated. These groups of patients are likely to be undergoing adjuvant therapy at this stage or may experience a progressive disease (Fig.6). Wade (1989) 12 suggest that the patients who were considerably less happy were socially restricted due to ill health or they were in pain. Pringle (2001) 9 reinforces this. Social Observations 6-12 months 0% 20% 40% 60% 80% 100% Colostomy Ileostomy Urostomy Not resumed normal activities Number: 86, 54, 18 Social isolation Figure 6 Resumed normal activities Due to insufficient sub coding in the Observation Index the categories psychological, social and sexual was incomplete and it was difficult to make comparisons. The authors recognised that the choice of answers in these categories should be wider in order to get more valid data. A revised version of the Observation Index is now available. 9

10 Discussion Our hypothesis was that the use of a standardized observation index and a Follow-up form is a tool that enables ET nurses to have increased awareness of individual patient problems, to provide early detection and intervene appropriately. The forms did not always provide sufficient information because guidelines on how to complete the forms were not available. In addition there was a lack in the observation index stating gender, age, time of surgery and surgery performed. This has been corrected in the revised codes for the Follow up form to help identify and prevent long term ostomy complications. See attachment 2 In general the same problems were identified for ostomy patients in all the participating countries. The hypothesis has been proven and demonstrates the importance of a full 1-year follow up. The findings indicate the need for an even longer follow up period. Our international working group was able to develop a standardised History Taking Form and Follow-up-Form to enhance ostomy patient care. International conformative documentation reduces the risk of litigation and provides for continuity of care and allows ET s to gain insight into international nursing practises. (Skirton 2002) 11. These forms are tools to improve quality of stoma care thus improving quality of life for the patient. Early detection of problems and proactive intervention demonstrates the importance of specialized stoma care nursing (Brooten D, Naylor MD 1995) 4. Along the way our working group evolved as well. This study has proven that ET s from different countries, with different training, in different practices, but with the same will to improve can overcome borders and boundaries in order to successfully work together. 10

11 Conclusion Developing the Follow-up form and Observation Index, has made us reflect on and evolve our own daily practise. Sharing of best practise and the use of the Follow up form and the Observation Index leads to: Evidence based nursing. Improves and standardizes the quality of care. Proves the importance of specialised stoma care intervention. Can help new ET s develop their practise. Facilitates cost effectiveness of specialised nursing services. Allows for conformative language. Easy to use tool. Allows movement of patient and records between different hospitals and Trusts, nationally as well as internationally Reduces the risk of litigation. Early detection of problems and proactive intervention. Education tool for multi disciplinary teams. Based on recommendations from this study the group is continuing the study in order to get more reliable data and validate the tool. The observation index has been updated, guidelines written and the number of participants has been increased. The new Observation index is available as a standalone practise guideline for health professionals. Working in an international group is time consuming, stimulating, thought provoking and very worthwhile, and it is possible to reach a consensus ( Bendz M 2002) 2. Thanks to Dansac A/S for outstanding, never ending support with this project. 11

12 References 1. Allison M: Helping to adjust; An holistic approach to stoma care, Nursing Standard June 1/Volume 8/ Number RCN Nursing Update 3 2. Bendz M, CasMedine G, Søderback I, Cavvalho G, Sapountzi-Krepia D: Discharge of frail older people from acute hospitals across Europe. British Journal of Nursing 2002; 2: Black P: Common Problems following Stoma Surgery. British Journal of Nursing 1994; 8: Brooten D, Naylor MD. Nurses effect on changing patient outcomes. Image- the journal of Nursing Scholarship Vol.27 (2) Summer 1995, Lyon C, Smith A: Abdominal Stomas and their Skin disorders. UK: Martin Dunitz. Ltd, Marek KD. Measuring the effectgivness of Nursinf Care. Outcomes management for Nursing practise Volo1 (1). Oct/Dec p Metcalf C. Changing documentation to improve stoma care. Professional Nurse. February 2000 Vol. 15 No. 5 p Pearson A and Peels S. Clinical nurse specialists. International Journal of Nursing Practice. Vol. 8 (6) December 2002 p S11-S Pringle W and Swann E.Continuing care after discharge from hospital for stoma patients. British Journal of Nursing 2001; 10 (19) Saunders H B Stoma care nurse, a new role. Nursing Times 70 (16), p Skirton H 2002 International Collaboration in genetic nursing, Nursing Standard 17 (5) Wade B;: A Stoma is for Life, Scutari Press

13 Attachment 1 13

14 Attachment 2 14