Table 1.
Summary of included studies
| Author and year of study | Country | Registry featured | Study design | Population | n (total) | PROMs/PREMs reported |
| Byrne et al,15 2017 | UK | Adelphi Real-World Disease-Specific Programme (Melanoma) |
Cross-sectional | Patients with melanoma, breast cancer, gastric, non-small cell lung and prostate cancer | 4899 | FACT-G |
| Hallworth et al,16 2017 | UK | Adelphi Real-World Disease-Specific Programme (Melanoma) |
Cross-sectional | Patients with melanoma, non-small cell lung and prostate cancer | 4899 | FACT-G |
| Rider et al,22 2017 | UK | Adelphi Real-World Disease-Specific Programme (Melanoma) |
Cross-sectional | Patients with melanoma, breast cancer, gastric, non-small cell lung and prostate cancer | 4899 | FACT-G |
| Buchanan et al,12 2017 | USA | Adelphi Real-World Disease-Specific Programme (Melanoma) |
Cross-sectional | Patients with melanoma | 183 | FACT-M, EQ-5D |
| Buzaglo et al,14 2017 | USA | Cancer Experience Registry | Cross-sectional | Melanoma survivors | 56 | Registry-specific items (‘financial impact of cancer’, ‘cost of care communication’) |
| Buzaglo et al,13 2016 (abstract) | USA | Cancer Experience Registry | Cross-sectional | N/A | N/A | N/A |
| Jochems et al,20 2017 (summary) | The Netherlands |
Dutch Melanoma Treatment Registry |
Longitudinal cohort | Patients with melanoma—all stages | 1472 | EQ-5D-3L, FACT-G, FACT-M |
| Horevoorts et al,17 2017 (abstract) | The Netherlands |
PROFILES Registry | Cross-sectional | Survivors of melanoma, basal/squamous cell carcinoma, prostate cancer, ovary cancer, endometrial cancer, thyroid cancer, Hodgkin’s or non-Hodgkin's lymphoma, chronic lymphatic leukaemia or multiple myeloma | Not reported | EORTC QLQ-C30, DS14, HADS, FAS, EORTC QLQ- INFO-25, DS14 |
| Husson et al,41 2018 (abstract) |
The Netherlands |
PROFILES Registry | Cross-sectional | Patients with a diagnosis of colon cancer, rectum cancer, melanoma, basal/squamous cell carcinoma, endometrial cancer, ovarian cancer, prostate cancer, thyroid cancer, Hodgkin’s or non-Hodgkin's lymphoma, chronic lymphocytic leukaemia or multiple myeloma | 6895 | EORTC QLQ-C30 |
| Huibertse et al,18 2017 | The Netherlands |
PROFILES Registry | Cross-sectional | Melanoma or prostate cancer survivors | 767 | EORTC QLQ-C30 V.3.0, MSPSS, IOC V.2.0 (‘health worries subscale’), study-specific items |
| Mols et al,21 2012 | The Netherlands |
PROFILES Registry | Cross-sectional | Survivors of melanoma, colorectal cancer, Hodgkin’s or non-Hodgkin's lymphoma, or multiple myeloma | 2892 | Study-specific items |
| Van de Wal et al,25 2016 | The Netherlands |
PROFILES Registry | Cross-sectional | Stage I or II survivors of melanoma, colorectal, endometrial, and thyroid cancers, or Hodgkin’s and non-Hodgkin's lymphoma | 2615 | IOC (‘health worries subscale’), SF-36, EORTC QLQ-C30, EORTC QLQ-INFO25 (three items) |
| Van de Wal et al,24 2014 | The Netherlands |
PROFILES Registry | Cross-sectional | Stage I or II survivors of melanoma, colorectal, endometrial, and thyroid cancers, or Hodgkin’s and non-Hodgkin's lymphoma | 2615 | IOC (‘health worries subscale’) |
| Van de Poll-Franse et al,23 2011 (summary) |
The Netherlands |
PROFILES Registry | Cross-sectional | N/A | N/A | EORTC QLQ-C30, EORTC QLQ-INFO26, FAS, HADS |
DS14, Type-D Scale; EQ-5D, EuroQol-5 Dimensions; FACT-G, Functional Assessment of Cancer Therapy-General; FACT-M, Functional Assessment of Cancer Therapy-Melanoma; FAS, Fatigue Assessment Scale; HADS, Hospital Anxiety and Depression Scale; IOC, Impact of Cancer; MSPSS, Multidimensional Scale of Perceived Social Support; PREMs, patient-reported experience measures; PROFILES, Patient-Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship; PROMs, patient-reported outcome measures; EORTC QLQ-C30, European Organisation for Research and Treatment of Cancer Core Quality of Life Questionnaire 30; EORTC QLQ-INFO25, European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Information Module 25; EORTC QLQ-INFO26, European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Information Module 26; SF-36, Short Form-36 item.