Table 1 Study characteristics of identified studies

Arnold et al., 2005 [52]

N = 109, foregut, midgut NET, CUP (locally advanced, metastatic)

octreotide

octreotide + INT

no

QLQ-C30

Bajetta et al., 2006 [53]

N = 60, well-differentiated intestinal, pancreatic, bronchial NET, other, CUP (low-grade malignancy)

lan ATG

lan MP

no

QLQ-C30

Caplin et al., 2014 [42] (CLARINET)

N = 204, well- or moderately differentiated pancreatic, midgut, hindgut NET, other, CUP (progressive, metastatic)

lan ATG

placebo

no

QLQ-C30, QLQ-GI.NET21

Jacobsen & Hanssen, 1995 [54]

N = 11, intestinal NET, PNET (liver metastases)

octreotide

placebo (cross-over design)

no

GHQ-30, PAIS

Meyer et al., 2014 [55]

N = 86, PNET, GI foregut NET, CUP (advanced, metastatic)

capecitabine + streptozocin + cisplatine

capecitabine + streptozocin

no

QLQ-C30

Raymond et al., 2011 [56]

N = 171, well-differentiated PNET (advanced, metastatic)

sunitinib

placebo

no

QLQ-C30

Rinke et al., 2009 [57] (PROMID)

N = 85, well-differentiated midgut NET (metastatic)

octreotide LAR

placebo

no

QLQ-C30

Yao et al., 2016 [45] (RADIANT-4)

N = 302, well-differentiated GI-NET, bronchopulmonary NET (advanced, progressive)

everolimus

placebo

no

FACT-G

Bodei et al., 2011 [58]

N = 51, bronchial, pancreatic, duodenal, ileal, appendicular, sigma-rectal NET, CUP (progressive, other)

¹⁷⁷Lu-DOTATATE

-

no

QLQ-C30

Bushnell et al., 2010 [59]

N = 90, carcinoid (metastatic, refractory to octreotide)

⁹⁰Y-DOTADOC

-

no

EQ-5D

Claringbold et al., 2011 [60]

N = 33, well-differentiated NET (progressive)

¹⁷⁷Lu-DOTATATE

-

no

QLQ-C30

Cwikla et al., 2010 [61]

N = 60, GEP-NET (progressive, metastatic)

⁹⁰Y-DOTATATE

-

no

QLQ-C30, QLQ-GI.NET21

Delpassand et al., 2014 [62]

N = 37, GEP-NET (progressive)

¹⁷⁷Lu-DOTATATE

-

no

QLQ-C30

Ducreux et al., 2014 [43];

Mitry et al., 2014 [44] (BETTER)

N = 34, well-differentiated PNET (progressive, metastatic)

N = 49, well-differentiated GI-NET (progressive, metastatic)

bevacizumab + 5-FU/streptozocin;

bevacizumab + capecitabine

-

no

QLQ-C30

Frilling et al., 2006 [63]

N = 18, ileal, pancreatic NET, paraganglioma, gastrinoma, CUP (progressive, metastatic)

⁹⁰Y-DOTATOC; ¹⁷⁷Lu-DOTATOC

-

no

SF-36

Khan et al., 2011 [64]

N = 256, carcinoid, PNET, CUP, gastrinoma, glucagonoma, insulinoma, VIPoma (with and without metastases)

¹⁷⁷Lu-DOTATATE

-

yes

QLQ-C30

Korse et al., 2009 [65]

N = 39, GI-NET (advanced, metastatic)

octreotide LAR

-

no

QLQ-C30

Kulke et al., 2008 [66]

N = 107, carcinoid, PNET (advanced)

sunitinib

-

no

EQ-5D, FACIT-Fatigue scale

Kvols et al., 2012 [67]

N = 45, GI-NET (advanced, metastatic)

pasireotide

-

no

FACIT-D

Martin-Richard et al., 2013 [68]

N = 30, well-differentiated GEP-NET, bronchopulmonary NET, CUP (progressive)

lan ATG

-

no

QLQ-C30

Ruszniewski et al., 2004 [69]

N = 71, foregut, midgut, hindgut NET, other (not terminally ill)

lan PR

-

no

QLQ-C30

Wymenga et al., 1999 [70]

N = 55, carcinoid, gastrinoma, VIPoma (tumour stages III and IV)

lan PR

-

no

QLQ-C30

Zuetenhorst et al., 2004 [71]

N = 26, well-differentiated ileo-cecal, gastric, bronchopulmonary NET, CUP (metastatic)

INT followed by unlabelled MIBG followed by ¹³¹I-MIBG

-

no

QLQ-C30

Fröjd et al., 2007 [72];

Fröjd et al., 2009 [73]

N = 36, carcinoid (metastatic, other)

INT; octreotide; INT + octreotide; CTX; octreotide + CTX; no treatment

normative data (subsample)

yes

QLQ-C30

Haugland et al., 2013 [74]

N = 37, GI-NET (not terminally ill)

medical treatment (n.s.)

-

yes

SF-36

Kalinowski et al., 2009 [75]

N = 9, bronchial, jejunal, ileal, gastric NET, PNET, insulinoma (liver metastases)

⁹⁰Y microspheres

-

no

QLQ-C30, QLQ-LMC21

Kwekkeboom et al., 2003 [76]

N = 35, GEP-NET (progressive, other)

¹⁷⁷Lu-DOTATATE

-

no

QLQ-C30

Larsson & Janson, 2008 [77]

N = 18, midgut carcinoid (n.s.)

INT

-

yes

QLQ-C30, FACT-An

Larsson et al., 2001 [78]

N = 24, midgut carcinoid (metastatic, other)

INT; SSA; INT + SSA

normative data

yes

QLQ-C30

O’Toole et al., 2000 [79]

N = 33, intestinal NET, PNET, other (metastatic)

octreotide followed by lanreotide

lanreotide followed by octreotide

no

ISPN

Pasieka et al., 2004 [80]

N = 24, small bowel carcinoid, medullary thyroid cancer, CUP (progressive, metastatic)

¹³¹I-MIBG; ¹¹¹In-octreotide

-

no

ad hoc questionnaire

Spolverato et al., 2015 [81]

N = 85, intestinal, pancreatic, bronchial NET, CUP (neuroendocrine liver metastasis)

surgical vs. nonsurgical treatment

-

yes

self-constructed questionnaire

Teunissen et al., 2004 [82]

N = 50, carcinoid, PNET, CUP, gastrinoma, insulinoma (metastatic)

¹⁷⁷Lu-DOTATATE

-

yes

QLQ-C30

Beaumont et al., 2012 [83];

N = 663, carcinoid, islet cell, “do not know or not sure which type” (local, regional, distant, currently not present)

surgery; surgery + SSA; other; no past/current treatment

normative data

yes

SF-36, PROMIS global health short form, PROMIS-29

Pearman et al., 2016 [84]

-

Gelhorn et al., 2016 [85]

N = 11, midgut, hindgut NET (metastatic)

telotristat etiprate

normative data

yes

QLQ-C30, QLQ-GI.NET21

Haugland et al., 2009 [86]

N = 96, GI-NET (not terminally ill)

INT; SSA; INT + SSA; CTX; no treatment

normative data

yes

SF-36

Haugland et al., 2016 [87]

N = 196, GI-NET (not terminally ill)

medical treatment (n.s.)

normative data

yes

SF-36

Larsson et al., 1998 [88]

N = 17, carcinoid, PNET (not terminally ill) (+ staff, N = 17)

INT; SSA; INT + SSA

-

yes

QLQ-C30

Larsson, Sjöden et al., 1999 [89]

N = 119, carcinoid, PNET (n.s.)

INT + octreotid; INT; octreotide; CTX; XTR; omeprazol; no treatment

-

yes

QLQ-C30

Larsson, von Essen et al., 1999 [90]

N = 99, carcinoid, PNET (not terminally ill)

INT; SSA; INT + SSA

-

yes

QLQ-C30

Larsson et al., 2003 [91]

N = 19, carcinoid (n.s.) (+ staff, N = 19)

INT; SSA; INT + SSA

-

yes

semi-structured interviews

Larsson et al., 2007 [92]

N = 83, carcinoid, PNET (n.s.)

INT/octreotide; CTX; XTR; omeprazol; no treatment

-

yes

QLQ-C30

Petzel et al., 2012 [93]

N = 240, PNET, periampullary neoplasms (disease-free after surgery)

no current treatment

-

yes

FACT-Hep

Pezzilli et al., 2009 [94]

N = 44 PNET (disease free, advanced)

SSA; SSA + other; no treatment

normative data

yes

SF-12, GHQ-12

Pezzilli et al., 2010 [95]

N = 44 ileal NET (disease free, advanced)

SSA; INT; CTX; SSA + other; no treatment

yes

SF-12

Ruszniewski et al., 2016 [96] (SYMNET)

N = 273, small bowel carcinoid, appendicular, colonic, bronchopulmonary NET, CUP (92 % with metastases)

lan ATG

-

yes

QLQ-C30, QLQ-GI.NET

van der Horst-Schrivers et al., 2009 [97]

N = 43, midgut NET (metastatic)

SSA; INT; SSA + INT

normative data

yes

QLQ-C30

von Essen et al., 2002 [98]

N = 85, GI-NET (n.s.)

INT; SSA; INT + SSA

-

yes

QLQ-C30

Garcia-Hernandez et al., 2012 [99]

N = 74, GI-NET (n.a.)

n.a.

-

yes

QLQ-C30, QLQ-GI.NET21

Gyökeres et al., 2010 [100]

N = 93, GI-NET (59 % with metastases)

SSA

-

yes

QLQ-C30, QLQ-GI.NET21

Marinova et al., 2016 [101]

N = 68, PNET (n.a.)

PRRT (n.s.)

-

yes

QLQ-C30

Pavel et al., 2013 [102]

N = 126, PNET (advanced)

everolimus

-

no

QLQ-C30, QLQ-GI.NET21

Strosberg et al., 2015 [103]

N = 230, midgut NET (advanced, progressive, metastatic)

¹⁷⁷Lu-DOTATATE

octreotide LAR

no

QLQ-C30, QLQ-GI.NET21