Table 1.
Characteristics of the studies reviewed, n = 35.
| References | Design | Country | Cancer type | QoL measure | Aspect of QoL assessed | Other outcomes | Sample size | Limitations | Time between assessments |
|---|---|---|---|---|---|---|---|---|---|
| Andrykowski et al. (18) | Cohort | US | Breast | FSI; FSI-TT; FCS | Fatigue | None | N = 102 at pre-treatment; N = 73 at T1; N = 39 at T2 | (1) 62% attrition from baseline to post-treatment testing. (2) Sample lacks racial/ethnic representation. |
Pre-treatment to post-treatment 1: M = 70.2 days (SD = 40.9; range 22–202) Pre-treatment to Post-treatment 2: M = 193.8 days (SD = 57.3; range 115–364) |
| Anota et al. (19) | Cohort | France | Breast | EORTC QLQ-C30; EORTC QLQ-BR23 BC | Global QoL; physical, emotional cognitive, role, and social functioning, fatigue, pain, sexual functioning | Nausea and vomiting; dyspnea; insomnia; appetite loss; constipation; diarrhea; financial difficulties; body image; future perspectives; systemic therapy side effects; arm and breast symptoms; hair loss | N = 317 at baseline; N = 311 at T1; N = 304 at T2; N = 290 at T3 | (1) Potential for recall bias using “Then” test. (2) Failure to report sample demographic. |
Baseline to T1 (discharge following initial hospitalization): median = 6 days, (range 1.5–81.5) Baseline to T2: 3 months Baseline to T3: 6 months |
| Bernhard et al. (20) | Cohort | Switzerland | Colon | LASA scale anchored at ‘perfect health-worst health' | Global QoL; physical functioning, subjective health estimation | None | N = 187 recruited; N = 130 completed pre- and post-tests | (1) Duration between T1 (baseline/pre-test) and T2 (surgery) was too short. | Baseline/ “pre”-test to surgery: “Then”-test median = 12 days Adjuvant therapy: Baseline/”pre”-test to “then”-test: median = 50 days; “Then”-test to “post”-test: median = 14 days |
| Brinksma et al. (21) | Cohort | Netherlands | Multiple types: hematologic (N = 12); brain tumor (N = 7); solid tumor (N = 18) | PedsQL, Cantril's ladder, PPS, MSAS | Physical, emotional, cognitive, and social functioning, overall QoL | Child report: N = 51 enrolled, N = 37 completed all measures; Parent report: N = 100 enrolled, N = 80 completed all measures | (1) Small sample size (2) Broad distribution of age (3) 27% children and 20% parents, attrition, respectively | Pretest 2 weeks after diagnosis, post-test and “Then” test 3 months later | |
| Broberger et al. (22) | Cohort | Sweden | Lung | EORTC-QLQ-C30 | Global QoL; fatigue, physical functioning | None | N = 126 enrolled; N = 115 at T1; N = 89 at T2 | (1) Attrition of 30% by T2. (2) Possible recall bias. |
T1: 3 months after baseline T2: 6 months after baseline |
| Dabakuyo et al. (23) | Cohort | France | Breast | QLQ-C30, BR23, and EurQOL-EQ-5D | Global QoL; physical, emotional cognitive, role, and social functioning; fatigue; pain; sexual functioning | Nausea and vomiting; dyspnea; insomnia; appetite loss; constipation; diarrhea; financial difficulties; | N = 381 enrolled; N = 320 completed all measures | (1) 17% attrition (2) Short time between tests | Baseline to the end of the 1st medical examination/ hospitalization: <15 days for 79% of sample (N = 301) |
| body image; future perspectives; systemic therapy side effects; arm and breast symptoms; hair loss | |||||||||
| Echteld et al. (24) | Cohort | Netherlands | Multiple types: lung (N = 6); colorectal (N = 4); urogenital (N = 3); breast (N = 4); melanoma (N = 3); sarcoma (N = 2) other (N = 7) | SEI QoL-DW | Pain; fatigue; global QoL | Cues: affiliation; activities/hobbies/ interests; health progression; state of mind; quality of care; role, mental, physical functioning; religion/spirituality, harmony and acceptance; work/finances/ practical issues; autonomy/control; outlook | N = 29 patients selected from sample of 78 patients. N = 29 at T0; N = 16 at T1; | (1) Heterogeneity of cancer type (2) Small sample size. | Baseline: within 24 h of hospital admission T1: 7–14 days later |
| Gerlich et al. (25) | Cohort | Germany | Prostate | EORTC-QLQ-C30 | Physical, role, emotional, cognitive, and social functioning | None | N = 437 recruited; N = 402 at follow-up | (1) Results pertain to the whole sample of patients, so unable to examine response shift on an individual level. (2) Short time-frame used, so unable to assess RS in later disease. (3) Potential bias from different contexts of both assessment occasions (hospital stay for baseline vs. at home for follow-up)—this constitutes method variance. |
Baseline: start of treatment Follow-up: 3 months after baseline |
| Hagedoorn et al. (26) | Cohort | Netherlands | Multiple types: advanced breast (N = 53); gastrointestinal tumors (N = 30); lymphomas (N = 32); genitourinary (N = 16); lung (N = 15); gynecological (N = 12) | EORTC-QLQ-C30 | Physical and emotional functioning, global QoL | Relative evaluation on a 7-point scale: “When you compare yourself to other people in a similar situation, how would you say you are doing?” | N = 307 recruited; N = 240 competed study | (1) Heterogeneity of cancer type (2) 22% attrition | T1: during 2nd/3rd cycle of chemotherapy T2: 3 months after T1 |
| Hamidou et al. (27) | Cohort | France | Breast | EORTC-QLQ-C30 and BR-23 | Global QoL; physical, emotional cognitive, role, and social | Nausea and vomiting; dyspnea; insomnia; appetite loss; | N = 359 at baseline; N = 357 completed at least 1 follow-up | (1) Reassessed QOL at 3 months, T3 “Then”-test not | T0: Inclusion T1: end of 1st hospitalization |
| functioning, fatigue; pain, sexual functioning | constipation; diarrhea; financial difficulties; body image; future perspectives; systemic therapy side effects; arm and breast symptoms; hair loss | measuring the same construct as T1 and T2 | T2: 3 months after 1st hospitalization T3: 6 months after 1st hospitalization | ||||||
| Hinz et al. (28) | Case-control | Germany | Multiple types: prostate (N = 242); kidney (N = 14); bladder (N = 14); testicles (N = 3); penis (N = 1); renal pelvis (N = 1) | Questionnaire on Life Satisfaction, PHQ-2, GAD-2 | Anxiety; depression; distress; health satisfaction | None | N = 427 recruited; N = 275 completed all questionnaires | (1) Heterogeneity of cancer type (2) Recall bias (3) 36% attrition rate | T1: 2 days before discharge T2: 2 weeks after discharge T3: 3 months after discharge |
| Hinz (29) | Case-control | Germany | Breast | EQ-5D VAS, PHQ-4. LOT revised | General health | None | N = 338 recruited; N = 308 at follow-up | (1) Patients had already begun treatment (2) At least 6 months since diagnosis | Baseline: radiological follow-up examination Follow-up: 3 months later |
| Ito et al. (30) | Cohort | Japan | Rectal | SF-36 | Mental health, role limitations due to emotional health, social functioning, vitality, general health, physical functioning, role limitations due to physical health, bodily pain | None | N = 18 recruited; N = 13 completed all questionnaires | (1) Small sample (2) Use of generic QoL measure (SF-36) instead of disease-specific scale (3) Recruitment hospital (with high level of expertise) may not have representative of other hospitals in and the typical healthcare received in Japan | Baseline: prior to surgery Follow-up: 2 months after surgery |
| Jakola et al. (31) | Cohort | Norway | Glioma | EQ-5D 3L, VAS | Global QoL | None | 172 at baseline; N = 106 at follow-up; N = 73 completed “Then”-test | (1) Potential selection bias via exclusion of patients with terminal illness, severe cognitive impairment, or severe language problems (2) Recall bias | Baseline: 1–3 days before surgery Follow-up: 6 months after surgery |
| Jansen et al. (32) | Cohort | Netherlands | Breast | SF-36, RSCL | Fatigue, global QoL, psychological well-being, physical function | None | N = 50 at baseline; N = 46 at follow-up | (1) Many pairwise t-tests (2) 58% attrition | Not specified |
| Jorngarden et al. (33) | Case-control | Sweden | Multiple types: CNS tumor (N = 2); Ewing sarcoma (N = 4); leukemia (N = 18); lymphoma (N = 20); osteosarcoma (N = 8); other (N = 4) | HADS, SF- 36 | Depression, anxiety, vitality, mental health | None | N = 56 at T1; N = 53 at T2; N = 45 at T3; N = 42 at T4 | (1) Small sample (2) Heterogeneity of cancer type | T1: shortly after diagnosis T2: 6 months after diagnosis T3: 12 months after diagnosis T4: 18 months after diagnosis |
| King-Kallimanis et al. (34) | Cohort | Netherlands | Multiple types: lung (N = 36); pancreatic (N = 49); esophageal (N = 55); cervical (N = 62) | SF-36 | Physical functioning, role functioning, pain, social functioning, mental health, vitality, general QoL | Health status, optimism, upward comparison | N = 202 recruited; attrition from baseline to 3 months follow-up not specified | (1) Heterogeneity of cancer type | Baseline: before surgery Follow-up: 3 months after surgery |
| Korfage et al. (35) | Cohort | Netherlands | Prostate | SF-36, EQ-5D VAS | Mental health, global QoL, physical function, sexual function | Vitality | N = 52 at baseline; N = 51 at follow-up | (1) Small sample (2) Used different modes of questionnaire administration at baseline and follow-up (3) Lack of information on marital status and education | Baseline: 1-month post-diagnosis (before treatment) Follow-up: 7 months post-diagnosis |
| Kvam et al. (14) | Cohort | Norway | Multiple myeloma | EORTC-QLQ-C30 | Pain, fatigue, global QoL, physical function | None | N = 260 recruited; N = 239 completed all questionnaires | (1) Lack of demographics information on participants | T1: Baseline T2: 3 months after T1 |
| Oort et al. (36) | Cohort | Netherlands | Multiple types: lung (N = 29); pancreas (N = 43); esophageal (N = 46); cervical (N = 52) | SF-36, MFI | Physical functioning, role functioning, pain, global QoL social functioning, mental health, fatigue | Vitality | N = 170 recruited; attrition from baseline to 3 months follow up not specified | (1) Heterogeneity of cancer type (2) Subjective decisions were involved in the equation modeling approach employed for the detection of response shift | Baseline: prior to surgery Follow-up: 3 months after surgery |
| Ousmen et al. (37) | Cohort | France | Breast | EORTC-QLQ-C30, QLQ-BR23 | Global QoL, physical, emotional cognitive, role, and social functioning, fatigue; pain, sexual functioning | Nausea and vomiting; dyspnea; insomnia; appetite loss; constipation; diarrhea; financial difficulties; body image; future perspectives; systemic therapy side effects; arm and breast symptoms; hair loss | N = 381 recruited. QLQ-C30: N = 359 at T0; N = 340 at T1; N = 322 at T2. QLQ-BR23: N = 352 at T0; N = 340 at T1; N = 322 at T2 | (1) Not all patients had confirmed breast cancer (2) Possible recall bias | T0: time of diagnosis T1: 3 months after surgery T2: 6 months after surgery |
| Rees et al. (38) | Case-control | Ireland | Prostate | IPSS, SPI | Urinary function | None | N = 76 at baseline; N = 74 at follow-up | (1) Uneven case to control matching | Baseline: newly diagnosed and before treatment Follow-ups: 3 and 6 months after diagnosis |
| Salmon et al. (39) | Cohort | France | Breast | MFI-20, QLQ-C30, State-Trait Anxiety Inventory, LOT | Fatigue, Anxiety | Optimism | N = 466; attrition from baseline to study completion not specified | (1) Does not report attrition, if any | Baseline: newly diagnosed Follow-ups: 10 visits over 24 months |
| Sharpe et al. (13) | Cohort | Australia | Multiple types: lung and colorectal primarily | SEIQoL-DW, FACT-G | Global QoL | Most important aspects of life | N = 56 at baseline; N = 28 completed all assessments | (1) 50% attrition (2) Small sample size. | T1: within 3 months of metastases diagnosis T2: 3 months after T1 T3: 6 months after T1 |
| Sharpley and Christie (40) | Cohort | Australia | Breast | SAS, SDS | Depression, anxiety | None | N = 445 invited to complete survey; N = 197 completed survey | (1) Then-test and now-test at same time (2) 56% attrition. | Then-test and now-test at same time |
| Sprangers et al. (17) | Cohort | Netherlands | Multiple types: breast (N = 59); lung (N = 28); prostate (N = 16); Hodgkin (N = 2) | EORTC-QLQ-C30, MFI-20 | Cognitive function, fatigue | None | N = 127 asked to participate; N = 105 at baseline; N = 99 at follow-up | (1) Heterogeneity of cancer type (2) 22% attrition. | Baseline: prior to radiotherapy Follow-up: after completion of radiotherapy |
| Tessier et al. (41) | Cohort | France | Breast | EORTC-QLQ-C30, SWLS | Physical, role, emotional, cognitive, social functioning | Life satisfaction | N = 215 recruited; N = 207 at T1 (1 year); N = 200 at T2 (2 years) | (1) Did not control for influence of personality traits that are known determinants of SWB and HRQoL. (2) Health utility index used does not consider pain scale. (3) No control group used for comparison. (4) RS only detected at last assessment point, so cannot determine whether phenomenon is transient |
Baseline: within 1 month of breast cancer diagnosis Follow-ups: 1 and 2 years after diagnosis |
| Traa et al. (42) | Cohort | Switzerland | Colorectal | WHOQOL-BREF | Physical functioning; mental health; social functioning | Environment | N = 164 recruited; N = 123 at 6 months | (1) Patient attrition | T0: preoperative T1: 3 months postoperative T2: 6 months postoperative |
| Verdam et al. (43) | Cohort | Netherlands | Multiple types: breast (N = 451); prostate (n = 267); lung (n = 287); other (n = 152) | EORTC-QLQ-C30, EQ-5D, RSCL | Physical functioning; fatigue; social functioning; mental health; listlessness; pain | Treatment-related symptoms; sickness | N = 1,157 recruited; N = 1,029 completed the assessments | (1) 11% attrition (2) Heterogeneity of cancer type | T0: before treatment T1 to T12: every week after treatment T13 to T24: monthly for up to 2 years |
| Verdam et al. (44) | Cohort | Netherlands | Multiple types: breast (N = 158); colorectal (N = 105); lung (N = 130); other (N = 44) | SF-36 | Mental health, role functioning, emotional functioning, physical functioning, social functioning, global QoL, physical functioning, pain | Vitality, health comparisons | N = 485 recruited; N = 447 at follow-up | (1) 8% attrition (2) Heterogeneity of cancer type | T0: prior to starting treatment T1: 4 weeks after start of treatment T2: 4 months after start of treatment Data analysis only included T0 and T1 data. |
| Visser et al. (45) | Cohort | Netherlands | Multiple types: head and neck (N = 12); gastrointestinal (N = 11); gynecological (N = 25); lung (N = 20); breast (N = 35); genitourinary tract (N = 76); hematological malignancies (N = 15); other (N = 5) | One-item numerical rating scale from 0 to 10 | Fatigue | None | N = 250 recruited; N = 199 completed all assessments | (1) Poor measurement | Pre-treatment: approximately 2 weeks before radiotherapy Post-treatment: 2–4 weeks after completion of radiotherapy |
| Visser et al. (46) | Cohort | Netherlands | Multiple types: lung (N = 29); periampullary (N = 43); esophageal (N = 46); cervical (N = 52) | SF-36, MFI | Mental health, role functioning, emotional functioning, social functioning, global QoL, physical functioning, pain, fatigue | Vitality | N = 170; attrition from baseline to study completion not specified | (1) Heterogeneity of cancer type | Baseline: prior to surgery Follow-up: 3 months after surgery |
| Visser et al. (4) | Cohort | Netherlands | Multiple types: lung (N = 36); periampullary (N = 49); esophageal (N = 55); cervical (N = 62) | SF-36 | Pain | None | N = 202; attrition from baseline to study completion not specified | (1) Heterogeneity of cancer type (2) Method variance | Baseline: prior to surgery Follow-up: 3 months after surgery |
| von Blanckenburg et al. (47) | Cohort | Germany | Multiple types: breast (N = 26); lung (N = 17); urologic (N = 14); digestive (N = 12); gynecologic (N = 8); other (N = 9) | Global QoL—WHOQOL-BREF−2 items; life goals questionnaire (GOALS)-−24 items; EORT-QLQ−5 items physical functioning | Global QoL, physical functioning, mental health | Life goals (affiliation, altruism, intimacy, achievement, power and variation). | N = 86 recruited; N = 44 at follow-up | (1) Heterogeneity of cancer type (2) Small sample size (3) 49% attrition | Follow-up: 20 months after the first (baseline) measurement |
| Westerman et al. (48) | Cohort | Netherlands | Lung | EORTC-QLQ-C30 | Fatigue | None | N = 23 recruited; N = 16 completed all assessments | (1) Small sample | T1: start of chemotherapy T2: 4 weeks after T1 T3: 7-10 day after chemotherapy completion T4: 6 weeks later |
CNS, central nervous system; EORTC QLQ-BR23 BC, European Organization for Research and Treatment of Cancer (EORTC) quality of life questionnaire breast cancer-23; EORTC QLQ-C30, EORTC quality of life questionnaire core-30; ESAS, Edmonton Symptom Assessment Scale; EurQOL-EQ-5D/EQ-5D, Euro QoL five-dimension scale; VAS, Visual Analog Scale; FACT-G, Functional Assessment of Cancer Therapy; FCS, Fatigue Catastrophizing Scale; FSI, Fatigue Symptom Inventory; FSI-TT, Fatigue Symptom Inventory—Then test; GAD-2, Generalized Anxiety Disorder Questionnaire-2; HADS, Hospital Anxiety and Depression Scale; HR QoL, health-related quality of life; IPSS, International Prostate Symptom Score; LASA, linear analog self-assessment; M, mean; MFI, multidimensional fatigue inventory; MSAS, Memorial Symptom Assessment Scale; N, number of subjects; Peds QL, Pediatric Quality of Life Inventory; PHQ-2/4, Patient Health Questionnaire-2/4; PPS, Play Performance Scale; RAI MDS-PC, Resident Assessment Instrument for Palliative Care; RSCL, Rotterdam symptom checklist; SD: standard deviation; SEI QoL-DW, Individual Quality of Life (SEI QoL): a direct Weighing procedure for Quality of Life Domains; SF-36, 36-Item Short Form Health Survey; SPI, Symptom Problem Index; SWB, subjective well-being; SWLS, Satisfaction with Life Scale; T, time (e.g., T1, time 1); VAS, visual analog scale; WHOQOL-Bref, World Health Organization Quality of Life assessment instrument abbreviated version; SAS, Self-Rating Anxiety Scale; SDS, Self-rating Depression Scale; LOT, Life Orientation Test; MFI-20, Multidimensional Fatigue Inventory-20.