R. Belk1, X. Anaya1, K. Solis1, R. Fearn1
111 Health and Technologies Inc., Tustin, California
Ostomates are prone to complications, including skin irritation, acute kidney injury (AKI) and hospital readmissions. Impaired quality of life (QOL) is commonly reported, particularly in the early postoperative period. In a systematic review of quality of life in colorectal cancer stoma patients, all studies demonstrated that living with a stoma influenced the overall QOL negatively. Painful or irritated peristomal skin, odor and a sense of loss were the most commonly reported ostomy-related difficulties (2).
Empowering stoma patients to self-manage has been shown to reduce complications including readmission and dehydration. For example, when ward staff, community clinicians and patients were educated to be aware of the importance of stoma self-management and hydration, readmission rates were reduced from 14.9% to 2.4% (3). A patient-centered self-care checklist for patients with ileostomy also significantly reduced readmission rates (4). Mastering stoma management has been found to be key in rebuilding social confidence after stoma surgery (1), stressing the specific importance of patient education in self-management. This is particularly important given the general drive towards enhanced recovery and earlier discharge of patients in the current healthcare economy.
Whilst existing hospital and nurse led programs can offer a great deal of formal and informal patient support, peer support from other patients can be vital to aid in the adjustment. Peer support programs offer a method to manage the complex factors involved in chronic disease management. A systemic review addressing the role of peer support in managing non-communicable diseases found that 82.6% of patients reported significant benefits of peer support (5). Benefits have been noted across multiple diseases and patient groups including inflammatory bowel disease (6, 7) and cancer (8, 9). A recent study demonstrated that a self-help ostomy survivorship intervention is affordable and effective (10). Social media is broadly used by patients across health conditions and disease types. Benefits such as increased community support, greater social connectedness, health management, health promotion and knowledge acquisition have been reported (11, 12).
Here we report on the impact of a novel remote peer support program utilizing both social media and direct support from a one to one peer support health coaching program that aims to improve quality of life for ostomates.
The 11 Health care platform provides support to patients through pairing ostomates with a patient-peer (a current or previous stoma patient) as part of a structured care pathway. Coaches are trained to deliver an education and support program mapped to key domains of the City of Hope Quality of Life Questionnaire for a Patient with an Ostomy (10). These domains relate to physical, psychological, social and spiritual well-being. Patients paired with coaches are supported by peers through direct contact (telephone, messaging service or email). The program is augmented by a curriculum-based education and support program using social media which provides access to support in the same domains.
Users of the remote health coaching service were invited to complete an electronic survey to assess the impact of coaching on quality of life. The groups were patients accessing peer support over a dedicated telehealth platform and those who access it exclusively over social media. All were invited to complete a survey including questions on their past medical history and length of time engaging in the program. Quality of life was assessed using a single item quality of life score on a scale of 1-10. Further questions asked patients to quantify the impact of the coaching program on a five-point likert scale ranging from strongly disagree to strongly agree. Questions mapped to the domains of health contained within the City of Hope questionnaire. Demographic data including stoma type and underlying condition was collected. Quality of life and demographic questions were also asked to the group of 25 coaches who deliver the program. Analysis was by the 11 Health data insights team.
25 patient coaches (PCs) completed the survey. Mean (range) age 36 (20-66). PCs were on average 12 years post the surgery that resulted in a stoma. The underlying condition was inflammatory bowel disease (IBD) in 76%, cancer in 12% and other conditions in 12%. 80% had a current or previous ileostomy, 16% colostomy and 4% other stoma types.
Data was available from 90 patients receiving coaching on the dedicated telehealth platform. Mean age was 39 (21-67). Stoma type was Ileostomy (81%), colostomy (12%), jejunostomy (2%) and urostomy (2%). Underlying disease was inflammatory bowel disease (65%) cancer (30%) and other conditions including diverticulosis and motility disorders in the remaining 5%. 4552 coaching-days of data were available for this cohort.
Of 27 respondents receiving coaching on social media, mean age was 27 (18-64). 74% reported IBD as their underlying condition. 15% reported cancer and 11% other conditions. 59% had an existing ileostomy, 22% colostomy and 19% no stoma.
Mean (SD) quality of life data was available for 77 respondents. The average quality of life reported among this population was 7.4 (2.3) In total, 72% of responders gave a quality of life score of 7 or higher (shown in figure 1). The same question was asked of peer support coaches. Here the average reported quality of life score was 8.0 (2.32).
A series of questions was asked regarding whether access to 11 Health services benefited the key quality of life domains of the City of Hope Quality of Life Questionnaire for a Patient with an Ostomy (10). These domains relate to physical, psychological, social and spiritual wellbeing. An average of 79% of respondents answered ‘agree’ or strongly agree’. The percentage of patients agreeing ‘agree’ or ‘strongly agree to each of the six questions can be seen in figure 1.
Figure 1: Percentage of responses to the question “How would you rate your quality of life today?” that scored greater than 7 in a cohort of 77 11 Health patients.
Figure 2: Percentage of patients answering ‘agree’ or ‘strongly agree’ to questions relating to the impact of coaching on quality of life.
Freetext answers to an open question on the impact of coaching support were reviewed by content analysis. The main categories of benefit are seen in figure 3. A word cloud representing the comments is shown in figure 4.
Figure 3: Category analysis of free text answers to the question "Do you have any feedback about the benefits or positive outcomes being supported by 11 Health has given you?"
Figure 4: Wordcloud visualization analysis of freetext answers to the question "Do you have any feedback about the benefits or positive outcomes being supported by 11 Health has given you?"
Quality of life is defined as the degree to which an individual is healthy, comfortable, and able to participate in or enjoy life events (13). Ostomy patients experience impaired quality of life relating to the associated morbidity and perceived loss relating to their stoma formation (14).
The main novel finding here is that the mean (SD) quality of life reported by a cohort of 75 users of a peer-delivered care program was 7.9(2.0). In a study of ostomates recovering from surgery quality of life was poor with mean quality of life on a single item scale reported as 5.1(1.7) (16).
Single item quality of life scales are validated tools for the assessment of self-rated health status and lower scores are associated with specific health problems, use of health services, changes in functional status, recovery from episodes of illness and mortality (15).
Interestingly the quality of life appeared lowest in patients who had been service users for less than 40 days at 5 (2.5) vs 6.75(2.5). Patient Coaches had the highest mean quality of life at 8.05(2.32). There was also a trend towards greater quality of life in patients who had been associated with the coaching service for longer, suggesting that the benefits to the patient may accumulate over time.
Coaches are trained to deliver support mapped to domains of the City of Hope Quality of Life Questionnaire (10). These domains relate to physical, psychological, social and spiritual well-being. That >83-85% responded ’agree’ or ‘strongly agree’ to questions relating to the first three domains indicates a very high degree of acceptability of the program and suggests tangible benefits. Also encouraging was that 90% responded in such a way to understanding their disease better and 74% to having more confidence when communicating with medical professionals as a result of the support received. Empowered patients tend to have better outcomes and this is specifically true for stoma patients for whom programs based on practical skills and mastery of having a stoma improve quality of life and clinical outcomes (3,4,1). A slightly smaller number (69%) answered ‘agree’ or ‘strongly agree’ when asked about benefits to their spiritual well-being which was defined as maintaining hope, reason to be alive, and/or religious activities. It is unclear if this indicates a lower degree of spirituality in this patient cohort or if this area is under served in the coaching program curriculum and more detailed patient feedback will be sought, however it should be noted that only two patients answered ‘disagree’ to the question meaning the vast majority of responses were neutral or positive.
Qualitatively the feedback received from social media and directly coached patients was excellent. The theme analysis of freetext comments revealed benefits for patients in coming to terms with their condition, benefitting socially from communicating with other patients and improved knowledge through education. The findings suggest that access to the support program and participation both through direct peer-support and indirectly over social media can lead to a higher quality of life reported by ostomates.
As a cross sectional analysis this work is limited by being unable to assess the impact of a coaching program in individuals over an extended period. Future work will assess this in a longitudinal study and the specific impact of being a health coach on their own experience as a patient will be evaluated. Further analysis will evaluate the content of coaching sessions and the perceived benefits to the patients by domain of quality of life.
In conclusion we have demonstrated that a cohort of ostomy patients receiving peer support through a structured program find it to be highly acceptable and report quality of life benefits in all domains known to be adversely impacted by having an ostomy. That the global quality of life scores are considerably higher than previously reported suggest that these benefits should be durable and tangible over a longer period.
1. Thorpe G, McArthur M, Richardson B. Healthcare experiences of patients following faecal output stoma-forming surgery: a qualitative exploration. Int J Nurs Stud. 2014;51(3):379-89.
2. Vonk-Klaassen SM, de Vocht HM, den Ouden ME, Eddes EH, Schuurmans MJ. Ostomy-related problems and their impact on quality of life of colorectal cancer ostomates: a systematic review. Qual Life Res. 2016;25(1):125-33.
3. Nagle D, Pare T, Keenan E, Marcet K, Tizio S, Poylin V. Ileostomy pathway virtually eliminates readmissions for dehydration in new ostomates. Dis Colon Rectum. 2012;55(12):1266-72.
4. Hardiman KM, Reames CD, McLeod MC, Regenbogen SE. Patient autonomy-centered self-care checklist reduces hospital readmissions after ileostomy creation. Surgery. 2016.
5. Fisher EB, Ayala GX, Ibarra L, Cherrington AL, Elder JP, Tang TS, et al. Contributions of Peer Support to Health, Health Care, and Prevention: Papers from Peers for Progress. Ann Fam Med. 132015. p. S2-8
6. Donegan A, Boyle B, Crandall W, Dotson JL, Lemont C, Moon T, et al. Connecting Families: A Pediatric IBD Center's Development and Implementation of a Volunteer Parent Mentor Program. Inflamm Bowel Dis. 2016;22(5):1151-6.
7. Mackner LM, Ruff JM, Vannatta K. Focus groups for developing a peer mentoring program to improve self-management in pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2014;59(4):487-92.
8. Park HY, Kim MJ, Kim JY, Kim S, Choi JY, Kim JH, et al. Could Peer Support Programs Be a Good Resource for Managing the Unmet Needs of Cancer Patients? J Cancer Educ. 2018.
9. Hornbrook MC, Cobb MD, Tallman NJ, Colwell J, McCorkle R, Ercolano E, et al. Costs of an ostomy self-management training program for cancer survivors. Psychooncology. 2018;27(3):879-85.
10. Grant M, McCorkle R, Hornbrook MC, Wendel CS, Krouse R. Development of a chronic care ostomy self-management program. J Cancer Educ. 2013;28(1):70-8.
11. Dunn AG, Mandl KD, Coiera E. Social media interventions for precision public health: promises and risks. NPJ Digit Med. 2018;1.
12. De Martino I, D'Apolito R, McLawhorn AS, Fehring KA, Sculco PK, Gasparini G. Social media for patients: benefits and drawbacks. Curr Rev Musculoskelet Med. 2017;10(1):141-5.
13. Jenkinson C. Quality of life 2019 [Available from: https://www.britannica.com/topic/quality-of-life.
14. Anaraki F, Vafaie M, Behboo R, Maghsoodi N, Esmaeilpour S, Safaee A. Quality of life outcomes in patients living with stoma. Indian J Palliat Care. 2012;18(3):176-80.
15. Bowling A. Just one question: If one question works, why ask several? J Epidemiol Community Health. 2005;59(5):342-5.
16. Kontovounisios C, Smith J, Dawson P, Warren O, Mills S, Von Roon A, et al. The Ostom-i™ Alert Sensor: a new device to measure stoma output. Tech Coloproctol. 2018;22(9):697-701.