Study | First author (year), country | Study aim | Sample size, tumour type, tumour stage, time since diagnosis or treatment (mean or median and range), mean age and range, % female, ethnicity, eligibility criteria | Treatment | Study design | Study observations |
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Studies including patients with an ostomy. | ||||||
Study 1 | Grant (2011) [32], USA. | Describe how gender shapes the concerns and adaptations of long-term CRC survivors with ostomies. | n = 33 CRC with ostomy, stage NR, ≥5y since diagnosis, R 8-19y. M age NR, R 63-76y; n = 16 Female, n = 29 White Non-Hispanic. | Surgery, specific treatments NR. | Theoretical framework NR, cross-sectional, 8 focus groups, directive/summative content analysis. | Sub-study of a larger quantitative study on HRQOL. Subsample for focus groups was recruited based on gender and high vs. low HRQOL score. |
Sun (2013) [33], USA. | Describe persistent ostomy-specific concerns and adaptations in long-term CRC survivors with ostomies. | n = 33 CRC with ostomy, stage NR, ≥ 5y since diagnosis & M since surgery for the 8 focus groups R 8-19y. M age for the 8 focus groups R 63-76y; n = 16 Female, n = 29 White Non-Hispanic. | Surgery, specific treatments NR. | Theoretical framework NR, cross-sectional, focus groups, content analysis. | Substudy of a larger quantitative study on HRQOL. Subsample for focus groups was recruited based on gender and high vs. low HRQOL score. | |
Study 2 | Altschuler (2018) [34], USA. | Discuss how mutuality may affect long-term ostomy caregiving. | n = 31 CRC with permanent ostomy, stage NR, ≥ 5y since diagnosis. n = 21 ≥ 71y (R 45-85y+), n = 17 Female, n = 27 Caucasian. Receiving ≥1 h of unpaid caregiving per week because of a health problem or functional impairment. | Surgery, specific treatments NR, n = 27 colostomy, n = 4 ileostomy. | Theoretical framework NR, cross-sectional, semi-structured interviews, inductive thematic analysis. | Informal caregivers included and interviewed separately from CRC. CRC vs. caregiver data not reported separately in paper. |
McMullen (2011) [35], USA. | Identify factors that hinder or facilitate detection and treatment of ostomy and skin care problems. | n = 31 CRC with permanent ostomy, stage NR, ≥ 5y since diagnosis. n = 21 ≥ 71y (R 45-85y+), n = 17 Female, n = 27 White/Caucasian. Receiving ≥1 h of unpaid caregiving per week because of a health problem or functional impairment. | Surgery, specific treatments NR, n = 27 colostomy, n = 4 ileostomy. | Ethnography, cross-sectional, in-depth interviews (n = 31) & repeated field observations (n = 6 families), qualitative thematic and matrix analysis. | Informal caregivers interviewed separately from CRC but data from CRC vs caregiver data not reported separately. Interview data and field observation data not reported separately. | |
Study 3 | Ramirez (2009) [36], USA. | Shed light on the sexual challenges and adaptations made in the wake of cancer surgery and treatment. | n = 30 CRC with permanent ostomy, stage NR, ≥ 5y since diagnosis. Age M 70y (R 44-93y), n = 30 Female, n = 22 White Non-Hispanic. | Surgery, specific treatments NR. | Anthropological perspective/phenomenology, cross-sectional, semi-structured interviews, analysis methods based on grounded theory. | Sample 100% Female; all heterosexual. |
Ramirez (2014) [37], USA. | Examine how female CRC survivors in the United States articulate their experience living with an ostomy as an erosion of full adult personhood. | n = 30 CRC with permanent ostomy, stage NR, ≥ 5y since diagnosis. Age M 70y (R 44-93y), n = 30 Female, n = 22 White Non-Hispanic. | Surgery, specific treatments NR. | Theoretical framework NR, cross-sectional, semi-structured interviews, analysis methods NR. | Sample 100% Female; all heterosexual. | |
Study 4 | Altschuler (2009) [38], USA. | Understand how a range of aspects of intimacy and sexuality is affected by having an ostomy as a result of CRC. | n = 22 CRC with permanent ostomy, stage NR, ≥ 5y since diagnosis. Age M 70y (R 44-93y)a, n = 22 Female, n = 22 White Non-Hispanic a. Married or partnered. | Surgery, specific treatments NR. | Theoretical framework NR, cross-sectional, semi-structured interviews, analysis methods NR. | Sample 100% Female and married/partnered; all heterosexual. Subsample of Ramirez, 2009/2014. |
Studies including patients with a reversed ostomy. | ||||||
Study 5 | Desnoo (2006) [39], UK. | Explore the physical and psychosocial issues of patients with anterior resection syndrome, strategies patients used when adapting to the chronic problems of the syndrome. | n = 7 RC with reversed ostomy, stage NR, M 11 m (R 7-12 m) since reversal surgery. Age M 70.7y (R 65-78y), n = 5 Female, race NR. No metastases, no local recurrence. | n = 7 anterior resection with temporary ileostomy, n = 5 adj C(R)T. | Grounded theory, cross-sectional, semi-structured interviews, constant comparative method. | |
Study 6 | Owen (2008) [40], UK. | Investigate how the experiences of having a stoma and subsequent stoma reversal affect the lives of participants. | n = 5 CRC with reversed ostomy, Duke Stage A or B at diagnosis, M 11 m (R 8-13 m) since reversal surgery. Age M 67.4y (R 60-78y), n = 3 Female, n = 5 Caucasian. No CT. | Surgery (specific treatments NR). | Phenomenology/Grounded theory, cross-sectional, semi-structured interviews, interpretative phenomenological analysis/thematic analysis. | |
Study 7 | Reinwalds (2018) [41], Sweden. | Illuminate what it means to live with a resected rectum due to RC, after reversal of a temporary loop ileostomy. | n = 10 RC with reversed ostomy, stage NR, M 15.2 m (R 12-20 m) since reversal surgery. Age M 71.6y (R 56-84y), n = 6 Female, race NR. No postop complications, no recurrent disease. | n = 10 anterior resection with loop ileostomy, n = 5 nadj RT of which n = 4 adj CT. | Phenomenological hermeneutical, cross-sectional, in-depth interviews, phenomenological hermeneutical method/ thematic structural analysis. | |
Studies including patients with and without a (reversed) stoma. | ||||||
Study 8 | Hardcastle (2018) [42], Australia. | Explore CRC survivors’ information and support needs in relation to health concerns and health behaviour change. | n = 24 CRC, n = 6 ostomy, n = 6 Stage A, n = 8 Stage B, n = 7 Stage C, n = 3 missing, M 25.25 m (SD 9.96) since diagnosis & ≤ 2y since tx completion. Age M 69.38y (R 63-77y), n = 13 Female, race NR. Increased risk for cardiovascular disease f. | Surgery NR, n = 10 adj CT, n = 3 adj RT, n = 3 adj CT/RT. | Theoretical framework NR, cross-sectional, semi-structured interviews, inductive thematic analysis/ content analysis. | |
Hardcastle (2017) [43], Australia. | Explore CRC survivors’ health perceptions following cessation of active treatment and explore factors influencing participation in health-promoting behaviours that may help reduce cardiovascular disease risk. | n = 24 CRC, n = 6 ostomy, n = 6 Stage A, n = 8 Stage B, n = 7 Stage C, n = 3 missing, M 25.25 m (SD 9.96) since diagnosis & ≤ 2y since tx completion. Age M 69.38y (R 63-77y), n = 13 Female, race NR. Increased risk for cardiovascular disease f. | Surgery NR, n = 10 adj CT, n = 3 adj RT, n = 3 adj CT/RT. | Theoretical framework NR, cross-sectional, semi-structured interviews, inductive thematic analysis. | ||
Maxwell-Smith (2017) [44], Australia. | Explore CRC survivors’ experiences and barriers towards physical activity among those with comorbidities, as a precursor to developing effective patient-centered interventions. | n = 24 CRC, n = 6 ostomy, n = 6 Stage A, n = 8 Stage B, n = 7 Stage C, n = 3 missing, M 25.25 m (SD 9.96) since diagnosis & ≤ 2y since tx completion. Age M 69.38y (R 63-77y), n = 13 Female, race NR. Increased risk for cardiovascular diseasef. | Surgery NR, n = 10 adj CT, n = 3 adj RT, n = 3 adj CT/RT. | Theoretical framework NR, cross-sectional, semi-structured interviews, inductive thematic analysis. | ||
Study 9 | Ball (2013) [45], USA. | Understand men’s perceptions of how RC treatment impacts their sexual functioning and how men manage sexual dysfunction. | n = 13 RC, n = 7 reversed ostomy, 6.5% stage I, 29% stage II, 64.5% stage IIIb,c, MD 6.4y since tx. Age MD 67y (R 47-82y), n = 13 Male, n = 13 Caucasian. No disease or recurrence. | n = 13 surgery, n = 7 CT, n = 5 RT. | Theoretical framework NR, cross-sectional, semi-structured interviews (n = 6) & focus groups (n = 7), thematic analysis. | 100% Male sample. |
Study 10 | Lu (2017) [46], Taiwan. | Explore the lived experiences of post-operative RC patients with altered bowel function. | n = 16 RC, n = 11 reversed ostomy, stageb n = 1 Tis, n = 3 T0, n = 3 T1, n = 4 T2, n = 5 T3, R 1w-36 m since surgery. Age M 55y (R 40-75y), n = 8 Female, n = 16 Taiwaneseb. ≥1 postop altered bowel function symptom. | n = 16 low anterior resectionb, n = 9 nadj CRTb, n = 1 nadj RTb, n = 8 adj CTb. | Husserlian descriptive phenomenological approach, cross-sectional, semi-structured interviews, thematic analysis using Colaizzi’s seven-step method. | Relatively young sample; Asian sample. |
Study 11 | McGeechan (2018) [47], England. | Explore the psychosocial and physical consequences of living with CRC as a chronic illness and how this changes survivor’s views and plans for their future, over time. | n = 6(T1)/n = 5(T2) CRC, n = 1 permanent ostomy, stage n = 1 T2d, n = 1 T3N1d, n = 4 unknownd, < 1-4y since diagnosisd. Age M 59.8y (44-72y)d, n = 2 Femaled, n = 6 White-Britishd. | n = 6 surgery, n = 1 CTd. | Theoretical framework NR, longitudinal (2 post-tx assessments over 6 m), semi-structured interviews, interpretative phenomenological analysis. | Data extraction based on second interview (T2), which includes the patient with permanent ostomy. |
Study 12 | Drott (2016) [48], Sweden. | Explore CRC patients’ experiences of oxaliplatin-induced neurotoxic side effects and how these side effects influence their daily lives over time. | n = 10(T1) CRC (n = 9 CC, n = 1 RC), at least n = 1 ostomyb, stage II-III, T4 12m since CT. Age M 61y (44-68y), n = 7 Female, n = 10 Swedishb. For n = 4 at T4b: n = 4 CC, n = 1 ostomy, n = 4 stage III, 12 m since CT. Age M 64y (R 61-67y), n = 2 Female, n = 2 Swedish. No neurotoxic side-effects, nadj or palliative tx, or metastasis. | n = 10 surgery with adj CT (Folfox or Xelofox). | Theoretical framework NR, longitudinal (4 post-tx assessments over 12 m), semi-structured interviews, thematic analysis. | Data extraction based on final interview (T4). |
Study 13 | Sun (2015) [49], USA. | Explore specific strategies used by CRC survivors to manage bowel dysfunction. | n = 92 CRC with permanent ostomy or anastomosis, stage NR, ≥ 5y since diagnosis. Age Interview subsample M 70y (R 44-93y)e, age Focus group subsample NR, gender Interview subsample n = 30 Female, gender Focus group subsample NR, race Interview subsample n = 22 White Non-Hispanic e, race Focus group subsample NR. | Surgery, specific treatments NR. | Theoretical framework NR. Mixed method study: cross-sectional, focus groups (n = 62) & interviews (n = 30), content analysis. | Subsample for focus groups was recruited based on high vs. low HRQOL score. Data from n = 62 focus group patients likely overlaps with Study 1 (Grant, [32]; Sun, [33]). Data from n = 30 interviews is likely the same data as Study 3 (Ramirez, [36, 37]). |
Study 14 | Urquhart (2012) [50], Canada. | Explore the views of breast and CRC survivors on their routine follow-up care, with respect to needs, preferences, and quality of follow-up, and their views on cancer specialist– compared with family physician–led follow-up care. | Descriptives for CRC subsample: n = 10 CRC, n = 4 permanent ostomy & n = 4 (to be) reversed ostomy, stage NR, 12–72 m since diagnosis & ≥ 3 m since tx. Age NR, n = 4 Female, race NR. Receiving routine follow-up care. No current disease, no complications from primary tx. | Treatment NR. | Phenomenology, cross-sectional, semi-structured interviews (n = 4 CRC) & focus groups (n = 6 CRC), thematic analysis. | Data extraction based on results presented for CRC. |
Study 15 | Burden (2016) [51], NR. | Explore individuals’ relationships with food along with their views and experiences of nutritional issues throughout the treatment and disease continuum for CRC. | n = 25 CRC, n = 8 ostomy, stage n = 1 Tubolovillous, n = 1 TNM stage 1, n = 2 stage 2, n = 14 stage 3, n = 7 stage 4, MD 17 m (R 7-30 m) since surgery. Age M 67.7y (SD 12.4), n = 7 Female, race NR. | n = 25 surgery, n = 9 adj CT, n = 9 nadj RT, n = 3 missing. | Phenomenology, cross-sectional, semi-structured interviews, thematic analysis. | Data extraction based on post-tx experiences. |