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Table 1 Summary of included studies reporting long-term patient-reported outcomes and experiences of colorectal cancer survivors (n = 20)

From: Patient-reported outcomes and experiences from the perspective of colorectal cancer survivors: meta-synthesis of qualitative studies

StudyFirst author (year), countryStudy aimSample size, tumour type, tumour stage, time since diagnosis or treatment (mean or median and range), mean age and range, % female, ethnicity, eligibility criteriaTreatmentStudy designStudy observations
Studies including patients with an ostomy.
Study 1Grant (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 2Altschuler (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 3Ramirez (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 4Altschuler (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 5Desnoo (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 6Owen (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 7Reinwalds (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 8Hardcastle (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 9Ball (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 10Lu (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 11McGeechan (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 12Drott (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 13Sun (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 14Urquhart (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 15Burden (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.
  1. CC Colon cancer, CRC Colorectal cancer, RC Rectal cancer, Tx Treatment, CT Chemotherapy, RT Radiotherapy, CRT Chemoradiotherapy, adj adjuvant, nadj neoadjuvant, NR Not reported, R Range, M Mean, MD Median, SD Standard deviation, w week, m month, y year(s), n sample size
  2. aDescriptives based on full sample (n = 30). NR for subsample (n = 22)
  3. bAdditional data provided by author(s)
  4. cPercentage based on valid/non-missing values
  5. dDescriptives based on full sample (n = 6). NR for subsample (n = 5)
  6. eBased on Ramirez [36, 37]
  7. fAmerican Society of Anesthesiologists physical status score = 2 or 3