Identifying Social Distress: A Cross-Sectional Survey of Social Outcomes 12 to 36 Months After Colorectal Cancer Diagnosis

Abstract

Purpose To establish the prevalence and determinants of poor social outcomes after a diagnosis of colorectal cancer (CRC). Patients and Methods All 12- to 36-month survivors of CRC (International Classification of Diseases [10th revision] codes C18 to C20) diagnosed in 2010 or 2011 and treated in the English National Health Service were identified and sent a questionnaire from their treating cancer hospital. This included the Social Difficulties Inventory, a 16-item scale of social distress (SD) comprising everyday living, money matters, and self and others subscales, plus five single items. Sociodemographic and clinical data were also collected. Analyses using descriptive statistics, χ2 tests, and logistic regression models were conducted. Results Response rate was 63.3% (21,802 of 34,467). Of the 21,802 participants, 17,830 (81.8%) completed all SD items; 2,688 (15.1%) of these 17,830 respondents were classified as experiencing SD (everyday living, 19.5%; money matters, 15.6%; self and others, 18.1%). Multivariable analysis demonstrated having ≥ three long-term conditions was the strongest predictor of SD (odds ratio [OR], 6.64; 95% CI, 5.67 to 7.77 compared with no long-term conditions), followed by unemployment (OR, 5.11; 95% CI, 4.21 to 6.20 compared with being employed), having recurrent or nontreatable disease (OR, 2.75; 95% CI, 2.49 to 3.04 compared with being in remission), and having a stoma (OR, 2.10; 95% CI, 1.86 to 2.36 compared with no stoma). Additional predictors of SD were young age (< 55 years), living in a more deprived area, nonwhite ethnicity, having advanced-stage disease, having undergone radiotherapy, and being a carer. Conclusion Although it is reassuring a majority do not experience social difficulties, a minority reported significant SD 12 to 36 months after diagnosis of CRC. The identified clinical and social risk factors are easy to establish and should be used to target support.

Sexual Function and Health-Related Quality of Life in Long-Term Rectal Cancer Survivors

“…27,28 Survivors with permanent ostomies are also more likely to experience social distress post-treatment. 29 Similar to other studies 4,5 , we found a high prevalence of persistent sexual dysfunction associated symptoms in both female and male survivors regardless of ostomy status. This suggests that problems with the physiologic functionality that impact sexual function are universal for all RC survivors.…”

Patient-reported outcome measures of the impact of cancer on patients’ everyday lives: a systematic review

“…12.6)Range—not specified100% F≤8 months post-diagnosis++ Wright 2005 [65]-Data pulled from 3 studies: -Study 1 (psychometric evaluation of Social Difficulties Inventory (SDI), including test-retest) -Study 2 (cross-sectional, single time-point survey) -Study 3 (longitudinal survey, assessments at baseline, 6-, 12- and 24-month examining the relationship between social difficulties and psychological distress with deprivation)Multiple609 = (270 + 189 + 150)Inclusion—not specifiedMean—not specifiedRange—not specified, grouped as ≤40, 41–60 and ≥6150% F50% MA range across the 3 studies (N.B. <3 months in study 3)+++ Wright 2015 [66]-Single time-point survey-Examining social difficulties, impact on social aspects of life including home and work, finances and relationships and recreationColorectal21,802SDI-16—17,830/21,802SDI-21—16,962/21,802Inclusion—>16Mean—not specifiedRange—not specified, grouped as <55, 55–64, 65–74, 75–84 and ≥85All respondents 41.8% F 58.2% MSD-16 39.9% F 60.1% M12–36 months post-diagnosis+++ s.d. standard deviation…”

“…Marked against the quality criteria in Box 2, and reported in Table 1, only four studies scored highly (+++) [47, 57, 65, 66]. Some individual criteria warrant specific comment.…”

“…The finding that cancer and its treatments commonly impact the social aspects of patients’ lives was evident in three papers [63, 65, 66] that had used the Social Difficulties Inventory (SDI), a validated and psychometrically tested instrument [10, 75–78]. In one article with pooled data from three studies, 45% of participants reported high levels of social difficulty, which was associated more with younger age, those with advanced disease and, to some extent, those from deprived areas [65].…”

Patient-reported outcomes in cancer survivorship

“…A cross-sectional survey using this instrument was conducted through the English National Health Service of 12-36 month colorectal cancer survivors with 21 802 participants. A total of 15.1% reported experiencing social difficulties [41].…”