Adaptive Resources and Unmet Needs Related to Ostomy Self-Care Among Long-Term Rectal Cancer Survivors
Background/Aims: Surgical treatment for rectal cancer can result in an intestinal ostomy that requires lifelong adaptation and investment of physical, cognitive and financial resources. However, little is known about the prevalence of functional limitation related to ostomies among long-term cancer survivors.
Methods: In 2010–2011, we mailed questionnaires to 313 long-term rectal cancer survivors with ostomies (≥5 years postdiagnosis) from two Kaiser regions, Northern California and Northwest. Potential participants (KP members age ≥18 years) were identified through tumor registries. The response rate was 66% (183/277). Data from the electronic medical record included hernia diagnoses and comorbidity score.
Results: Of respondents with ostomy who reported wearing a pouch (not irrigating), 64% (103/160) were male. Mean age at survey was 75 years. Health status: Health problems that could affect ostomy care capacity were fairly common. Mean body mass index (BMI) at time of survey was 26.76 (standard deviation 5.42), with 70% (105/150) of respondents reporting a significant change (+/-) in BMI since time of surgery; 28% (45/160) of respondents had a hernia diagnosis at some time after their surgery. Adaptive resources: Of participants who reported paying for their ostomy supplies, 55% (39/71) had at least some difficulty paying the cost. Women were significantly more likely to report difficulty than men (P=0.011). Fifteen percent (23/155) reported receiving help with their ostomy care. While 63% (100/160) of respondents were partnered at time of survey, women were significantly less likely to be partnered than men (p< 0.001). Functional limitations related to ostomy: 27% (39/147) of respondents reported changing their ostomy wafer or appliance more often than every 3 days, 27% (41/154) had problems with ostomy leakage, 25% (39/155) had problems with the skin around the ostomy, and 21% (33/155) reported having difficulty caring for their ostomy.
Discussion: Most rectal cancer survivors have health conditions that can worsen impairment and undermine adaptive capacity related to ostomy care and report difficulty paying for their ostomy supplies. Approximately 25% of survivors experienced limitations across multiple domains of ostomy-related functioning, yet only 14% reported receiving assistance with ostomy care. Further research should explore whether/how gender and partnered status influence resources or unmet needs for ostomy care assistance.
Bulkley J, McMullen CK, Hornbrook MC, Grant M, Wendel C, Herrinton LJ, Krouse RS. Adaptive Resources and Unmet Needs Related to Ostomy Self-Care Among Long-Term Rectal Cancer Survivors. J Patient Cent Res Rev 2015;2:85. http://dx.doi.org/10.17294/2330-0698.1072