The Role of Industry in Improving Quality of Life for Persons with an Ostomy: A Canadian Consensus

   Canada is a vast, diverse, multicultural country comprised of 10 provinces and three territories, each of which has unique demographics and variances regarding the provision of and reimbursement for healthcare. Most Canadian enterostomal therapy nurses (ETNs) practice within the full scope of ETN practice (wound, ostomy, and continence care), providing their clinical and rehabilitative expertise to the estimated 50,000 to 60,000 Canadians with ostomies.¹

   As such, they average about 98 patient visits per month, although some report conducting between 150 and 200 consultations per month.² Simple math suggests that each Canadian ETN would be responsible for 200 to 230 of the existing patients. This, of course, is an impossibility considering the irregular disbursement of ETNs across Canada and the scope of ETN practice.

   Today, the delivery of healthcare stresses the value of utilizing an interdisciplinary team approach to promote optimal outcomes. One vital aspect frequently overlooked is the inclusion of industry as an integral member of the interdisciplinary healthcare team. The roles of physicians and ETNs are clearly defined. What is less clear is the role industry can play in ostomy rehabilitation, product recommendation, and the on-going ability to interact with and support patients throughout their lives. A shared goal, such as improving the quality of life (QOL) for the Canadian ostomy population, is possible only when the diverse strengths, interests, and activities of all stakeholders are combined.³ To establish synchrony and attain the shared goal of improving QOL for Canadians with a stoma, certain systems, structures, and processes must be developed and implemented that reflect the expertise of all vested members of the healthcare team, including industry.

   Quality of life is a completely subjective phenomenon that changes over time. Although real and identifiable to the individual, it is often difficult for the person to put into words. Humans naturally strive for an upper level of capabilities in order to become totally fulfilled persons. Maslow⁴ describes this process as self-actualizing. For the purposes of this article, the authors equate the term self-actualizing with integration of the stoma into the patient's life. If the environment is right (ie, basic physical and psychological needs are met), people grow and strive to realize their inherent potential and attain maximum QOL - a level of living only they can identify. Other factors that must be considered in this process are age-related issues and length of time since surgery.^5,6 For example, the psychological and physical needs of a postoperative teen with an ileostomy are significantly different than a 65-year-old who has had a colostomy for 10 years. Consequently, the two individuals would likely define QOL quite differently.

  If basic human needs are not met, a person becomes stalled in life. The journey toward self-actualization, particularly for persons with a stoma, is often delayed or halted due to obstacles placed before them by healthcare and government systems, a paucity of resources, and a lack of the right information at the right time.⁷ The most significant block to ostomy rehabilitation appears to be a lack of accurate information. Certain lifestyle issues, such as changes in body image, loss of continence, and sexual concerns, are inherent to ostomy surgery. Less-than-ideal lifestyle issues are often poorly understood and acknowledged - people accept and live with their situations because they believe they have no one in whom they can confide or ask questions. Patients get caught in an emotional maelstrom as they seek solutions to their problems and answers to their questions, prolonging rehabilitation and wasting valuable time, energy, and healthcare resources. Patients often become depressed and withdrawn and may eventually seek the assistance of a psychiatrist without ever actually addressing their core problem. Patients want and have a right to more than pouching advice (see Table 1). They want assistance with real-life everyday issues.

   The application of knowledge is the capacity to act effectively.⁸ The ability of the individual with an ostomy to take control and make decisions about what is best is a step toward improved quality of life. Improving the flow of current and correct information to a person with a stoma can lead to more rapid rehabilitation.⁹ Healthcare professionals and all other vested parties, including industry and national and local support groups, have a duty to see that the needs of a person with an ostomy are met. Ostomy manufacturers have a broader communication network and sphere of influence than clinicians¹⁰ to provide and facilitate a communication and information process that could assist in improving the QOL for people with a stoma.

Procedure

   Ten Canadian ETNs representative of almost every province were invited by ConvaTec Canada to participate in an Advisory Council (AC) meeting to examine the lifestyle needs of Canadians living with an ostomy. Their challenge was to identify key elements critical to the collaborative effort between manufacturers of ostomy supplies and ETNs in order to maximize the lifestyle options available to Canadians living the ostomy experience.

   Before attending the meeting, each ETN was asked to complete a survey (see Table 2) regarding the flow of information and services to patients and the role of industry in that process. In order to compare and contrast the ETNs' and patients' perspectives, the results of the pre-work survey were presented to the AC along with results from proprietary market research surveys¹¹ of end-users and ETNs. Additionally, a presentation by the President of the United Ostomy Association of Canada (UOAC) outlined the services provided by the organization, shared the results of their member survey, and reiterated the obstacles the organization encounters in providing those services. A young individual with an ostomy also was present throughout the meeting to represent the needs of those living the ostomy experience in Canada and to provide a "reality check" for all involved in the process.

   Differences in perception between patients and ETNs were identified in three areas: information, services, and differences among provinces relating to access to ETNs and reimbursement for ostomy supplies. For example, ETNs cited themselves as the main source of information for ostomy across the continuum, while less than half of the patients identified ETNs as the main source of ostomy information.

   Through open discussion of these findings, several specific gaps in information and services were identified at different points in the rehabilitation process. Once the gaps were clearly identified, the AC separated into two workshops to develop specific recommendations on how collaboration between industry, support organizations, and ETNs could assist in filling these gaps. After sharing the results of both workshops, the AC recommended that manufacturers follow a standardized protocol when communicating with ETNs, the UOAC, and patients in order to meet patient needs and fill current gaps. Using the consensus process, the AC developed a process map recommendation for ostomy manufacturers.

   Consensus is a process for group decision-making based on the theory that collective intelligence comes up with better solutions than individuals acting alone.¹² Such collaborative decision-making begins with a predetermined outcome, taking into consideration the viewpoint of every participant. In this case, the predetermined outcome was clarification of industry's role in supporting Canadian ETNs to maximize the quality of life for Canadians living the ostomy experience. A facilitator helped move the group through the agenda and discussion to meet objectives and deliverables in a timely fashion. Basically, the consensus process includes the following: 1) clear statement of the problem, goals, and deliverables, 2) discussion of the problem, allowing each person to voice an opinion, 3) suggestion of a proposal that attempts to synthesize all the feelings and insights expressed, 4) request consensus from the group; if no consensus, address issues via discussion, 5) restatement of the proposal; request consensus; consensus achieved, and 6) restatement of the decision.
At the end of the AC meeting, two key conclusions were made and recommendations were established in addition to developing a process map defining the communication process between ostomy manufacturers, ETNs, support groups, and patients.

   A process map is a flow chart that depicts the sequence of steps used to achieve a certain task and is used to describe the steps in a process, placing ownership and responsibility in the hands of the staff involved in executing the process. A detailed chart was selected by the AC from among several process map options because it is used to standardize or improve a work process. A work process is made up of "steps, tasks, or activities and has a beginning and an end. Using inputs, it produces a tangible product or an intangible service as its output."¹³

   According to Dawson,⁸ the greatest value provided to clients is making them more knowledgeable. Technology enables this process because it helps bring people together more effectively and rapidly and provides ways of interactively developing peoples' knowledge rather than dumping too much information at once or the wrong information at the wrong time. In this case, the AC considered the enabling technology to be the telephone and computer database, and the work process being mapped was the handling of patient input through a manufacturer's Customer/Professional Services Department.

Results

   As part of the pre-meeting work, members of the AC were asked to rate the QOL for the Canadian with an ostomy using a score of 1 through 10 with 10 being the highest (see Table 3). They considered several parameters, including the patient's level of self-care knowledge, the overall satisfaction with lifestyle, appliance wear time, and accessibility to information and supplies. The mean QOL score of the AC was 6.4 (range 1 to 10, with 10 = excellent and 1 = very poor). Survey results of patients¹⁴ presented at the meeting demonstrated that many experienced leakage problems, did not feel confident about finding advice when they needed it, and wanted more information about product options from manufacturers. One of the most significant findings was that 20% of patients surveyed had no access to an ETN.

   In addition, during the first postoperative year, patients reported investigating alternative product options to meet their lifestyle needs or resolve management problems. Enterostomal therapy nurses, on the other hand, investigated product options shortly after surgery in an effort to solve management problems. Enterostomal therapy nurses also reported that reduced staffing had condensed their interaction with ostomy patients from visits at 3 weeks, 6 weeks, 3 months, 6 months, and yearly for the remainder of the patient's life to visits at 3 weeks, 6 months, and yearly for 3 years. The question arose regarding what happened to patients after they were discharged from the ETN's caseload. Who, if anyone, was maintaining a record of their progress and how could this be accomplished?

  It became evident that major differences existed in perceptions between patients and ETNs in several areas, including information and services. In addition, enormous discrepancies existed among the 10 provinces regarding coverage and payment for ostomy supplies, resulting in inequitable benefits for Canadians with a stoma. However, the AC concluded that inequitable reimbursement was a problem that could not be owned by manufacturers, ETNs, and patients, nor could it be addressed at this meeting, even though it clearly warranted change and further investigation.

   Gaps in ostomy rehabilitation. After the initial presentations, discussions, and workshops, the AC identified two major gaps in ostomy rehabilitation that were evident across the continuum of care: 1) the development of quality, pertinent resources; and 2) the dissemination of those resources. The group decided that filling these gaps could create a platform from which all vested parties could better attain solutions to problems. Filling these gaps also could help compress the time and energy required by the patient to move forward in life after ostomy surgery.

   The role of manufacturers. Because the infrastructure is already in place, it was decided that a manufacturer's Customer Service Department (sometimes called Professional Services or Customer Care) could act as a valuable tool and liaison between vested parties (eg, patients, ETNs, ostomy support groups, physicians, home care) to meet the needs of persons with an ostomy.

   A Customer Service Department receives inquiries through a variety of means - telephone calls, emails, and direct mail. These inquiries may be related to product, clinical, or service issues. Product inquiries may not always be related to the manufacturer's specific brand and ETNs may or may not be aware that the patient called a manufacturer's Customer Service or may not be aware of the information that was provided. Once a patient enters the manufacturer's Customer Service Department via an initial patient-placed phone contact, the AC sought to find a process that would bridge the gap between the patient and community resources and, at the same time, provide valuable feedback to the ETN - in essence, completing the communication loop.

   Protocol development. The AC recommended that manufacturers follow a communication protocol when communicating with ETNs and patients. They also recommended that manufacturers put in place a standardized internal process that would enable them to efficiently and effectively communicate with patients, retailers, and healthcare providers. An ideal Customer Service Department envisioned by the AC included one with standard operating procedures; respect for patient privacy; product recommendations and selection algorithms; bilingual service; a call center staffed by licensed professionals; access to the call center for people living in different time zones; expanded hours and emergency access; the capacity to log and track call history and product recommendations; up-to-date lists of ETNs, UOAC support groups, and other resources and services; 24- to 48-hour turnaround on delivery of samples; and generous sampling (ie, enough product for the patient to be able to use for at least 2 weeks).

   The AC developed a detailed process map for patients entering a manufacturer's Customer Service Department in an effort to examine some of the variances that might occur and develop ways these variances could be handled (see Figure 1).

   Following the steps developed in the process map, a patient would be referred to various internal resources based on the nature of the call. When a patient calls a manufacturer's Customer Service Department, a Customer Service Representative (CSR) interviews (triages) the patient regarding the nature of the call using a standardized internal communications protocol developed by the individual manufacturer. If a clinical problem is detected, the CSR refers the call to an in-house licensed healthcare professional (eg, RN, ETN) who conducts a telephone assessment using a standardized assessment tool. At the completion of this assessment, the RN recommends solutions and options such as: 1) referral to a community resource (eg, an ETN, the UOAC, home care, or a physician); or 2) if the problem is acute, referral to the emergency room. Later, through a follow-up call, the Customer Service RN determines whether the patient's problem has been resolved. If not, the RN restarts the assessment process. If the problem has been resolved, the RN places the patient on a recall/follow-up list (6 months, 1 year) at which time the patient is called, reassessed, and asked to participate in Quality Improvement Activities.

   If, however, the CSR initially determines that the caller has a product-related problem or a general QOL question or is seeking information, the patient is referred to a CSR who also assesses or reevaluates the patient's needs and makes appropriate recommendations (eg, refers to the local ETN or local ostomy support group, sends samples, provides name of retailer). Later, a follow-up call to the patient is placed to ensure that patient needs were met and the problem resolved. If in that interim the patient has developed a clinical problem, a referral to the RN is made during the follow-up call.

   The ultimate goal - with the patient's permission, of course - is to maintain contact throughout the period of time the patient has a stoma and sustain communication with the patient's community-based ETN while maintaining strict confidentiality.

Discussion

   A recurring theme that emerged throughout the AC meeting was the need to respect the patient's right to privacy and maintain confidentiality of individual healthcare information. Participants recognized that scenarios could occur in which the patient does not wish to have a particular ETN notified of a call to the manufacturer's Customer Service Department. Therefore, patients must be asked to provide permission to contact members of their healthcare team. Patients also need to be assured that their contact and medical information will not be shared with other entities for marketing purposes.
The process map developed by the AC is a blueprint from which individual ostomy manufacturers can build patient-centered programs and processes that focus on the improvement of the QOL of the individual with a stoma.

Conclusion

   Due to limited healthcare dollars and other resources, the needs of Canadians with an ostomy are currently not being met. These unmet needs negatively impact their quality of life. Patients have a right to receive information and make their own decisions about what is best for them. They also have the right to try different products and make a determination as to whether they want this information passed on to their healthcare provider. Manufacturers can play a vital role in meeting these needs by following a communication protocol in their Customer Service Department when communicating with ETNs and patients. Manufacturers should establish standardized internal processes that enable them to efficiently and effectively communicate with patients, retailers, support groups, and healthcare providers. It is hoped that the consensus communication tool developed by the AC will stimulate additional investigation and provide the impetus for ostomy manufacturers to re-evaluate their current processes and protocols as they interact with individuals with a stoma.

1. Estimates provided by the United Ostomy Association Canada.

2. Unpublished meeting transcript. The First Canadian ETNs' Advisory Council. Pre- Post- and Beyond: A Consensus Meeting on the Lifestyle Needs of the Ostomy Patient. February 20-22, 2004. Ste-Adele, Quebec, Canada.

3. Moxley RS. Leadership as partnership. In: Spears LC, Lawrence M, eds. Focus on Leadership: Servant Leadership for the 21st Century. Mississauga, Ontario: John Wiley & Sons;2002.

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5. Fleshman JW, Lewis MG. Complications and quality of life after stoma surgery: a review of 16,470 patients in the UOA registry. Seminars in Colon & Rectal Surgery. 1991;2(2):66-72.

6. Mihalopoulos NG, Trunnell EP, Bakk D, Moncur C. The psychological impact of ostomy surgery on persons 50 years of age and older. J WOCN. 1994;21:149-155.

7. Turnbull GB. The ostomy assessment inventory: a data-gathering process to enhance appropriate pouching system selection. Ostomy/Wound Management. 1998;44(2):28-37.

8. Dawson R. Developing knowledge-based client relationships: the future of professional services. Boston, Mass.: Butterworth-Heinemann; 2000.

9. Marquis P, Marrell A, Jambon B. Quality of life in patients with stomas: the Montreux study. Ostomy/Wound Management. 2003;49(2):48-55.

10. Turnbull GB, Turnbull RW. A winning combination: industry and healthcare providers. In: Krasner DL, Rodeheaver GT, Sibbald RG, eds. Chronic Wound Care: A Clinical Sourcebook for Healthcare Professionals, 3rd Ed. Wayne, Pa.: HMP Communications;2001:219-223.

11. Data on file. ConvaTec, a Division of Bristol-Myers Squibb Canada Co., Concept Testing of ConvaTec Customer Retention Program & Assessment of Usage & Attitudes, Allard-Johnson Communications & Jeane Ennis & Associates-Healthcare Marketing Research, Toronto, March 2003.

12. Consensus process. Available at: www.activism.net/peace/nvchd/consensus.htm. Accessed April 9, 2004.

13. Process Mapping for Continual Improvement. Continuing education notes from education seminar #4047. Dalhousie University. Halifax, Novia Scotia, Canada. 2002.

14. Data on file. ConvaTec, a Division of Bristol-Myers Squibb Canada Co., Data Analysis, ConvaTec Customer Questionnaire, Integrale MBD, Montreal, May 2003.