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Quality of life (QoL) impairments in patients with a pituitary adenoma: a systematic review of QoL studies

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Abstract

Purpose

Pituitary adenomas give rise to physical and psychological symptoms, which may persist after biochemical cure. Growing attention has been paid to quality of life (QoL) in these patients. We aimed to systematically analyze QoL assessment methods and QoL outcome in these patients.

Methods

We conducted a systematic literature search up to January 2014 in PubMed, Web of Knowledge, PsycInfo and EMBASE.

Results

102 papers assessing QoL in patients with a pituitary adenoma were included. In clinical (original) studies in which QoL was the primary outcome parameter (n = 54), 19 studies combined a generic questionnaire with a disease-specific questionnaire. QoL was found to be impaired in patients with active disease relative to controls, and generally improved during biochemical cure. However, no normalization occurred, with patients with remitted Cushing’s disease demonstrating the smallest improvement. Somatic factors (e.g., hypopituitarism, sleep characteristics), psychological factors (illness perceptions) and health care environment (rural vs. urban) were identified as influencing factors. Intervention studies (predominantly evaluating medical interventions) have been found to improve QoL.

Conclusions

The growing number of studies assessing QoL generally described the negative impact of pituitary adenomas. QoL research in this patient group could be further elaborated by the development of disease-specific questionnaires for prolactinoma and non-functioning adenoma, consequent use of generic and disease-specific questionnaires and using a long-term (longitudinal) follow-up. Surgical and pharmacological interventions improve but not normalize QoL. We postulate that there might be margin for further improvement of QoL, for instance by using psychosocial interventions, in addition to optimal medical treatment.

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Acknowledgments

We thank research intern Aurelie Girbes for her contribution to this review and Jan W. Schoones for his contribution to the literature search.

Conflict of interest

The authors have nothing to disclose.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Cornelie D. Andela.

Appendices

Appendix 1: Search strategy

PubMed

(“Pituitary Neoplasms”[mesh] OR “Pituitary Neoplasms”[all fields] OR “Pituitary Neoplasm”[all fields] OR “Pituitary Tumors”[all fields] OR “Pituitary Tumor”[all fields] OR “Pituitary Adenomas”[all fields] OR “Pituitary Adenomas”[all fields] OR “ACTH-Secreting Pituitary Adenoma”[all fields] OR “ACTH-Secreting Pituitary Adenomas”[all fields] OR “Corticotroph Adenoma”[all fields] OR “Corticotroph Adenomas”[all fields] OR “Cushing syndrome”[mesh] OR “Cushing syndrome”[all fields] OR “Cushing’s Syndrome”[all fields] OR “Hypercortisolism”[all fields] OR “Cushing disease”[all fields] OR “Cushing’s disease”[all fields] OR “Growth Hormone-Secreting Pituitary Adenoma”[all fields] OR “Growth Hormone-Secreting Pituitary Adenomas”[all fields] OR “Acromegaly”[all fields] OR “Prolactinoma”[all fields] OR “Prolactinomas”[all fields] OR “Microprolactinoma”[all fields] OR “Microprolactinomas”[all fields] OR “Macroprolactinoma”[all fields] OR “Macroprolactinomas”[all fields] OR “non-functioning adenoma”[all fields] OR “non-functioning adenomas”[all fields] OR “non-functioning pituitary adenoma”[all fields] OR “non-functioning pituitary adenomas”[all fields] OR “non-functioning macroadenoma”[all fields] OR “non-functioning macroadenomas”[all fields] OR “nonfunctioning adenoma”[all fields] OR “nonfunctioning adenomas”[all fields] OR “nonfunctioning pituitary adenoma”[all fields] OR “nonfunctioning pituitary adenomas”[all fields] OR “nonfunctioning pituitary macroadenoma”[all fields] OR “nonfunctioning pituitary macroadenomas”[all fields] OR “nonfunctioning macroadenoma”[all fields] OR “nonfunctioning macroadenomas”[all fields]) AND (“quality of life”[mesh] OR “quality of life”[all fields] OR “life quality”[all fields] OR “qol”[all fields] OR “daily functioning”[all fields] OR “daily routine”[all fields] OR “health related quality of life”[all fields] OR “well-being”[all fields] OR “wellbeing”[all fields]).

PsycINFO

(“Pituitary Neoplasms” OR “Pituitary Neoplasms” OR “Pituitary Neoplasm” OR “Pituitary Tumors” OR “Pituitary Tumor” OR “Pituitary Adenomas” OR “Pituitary Adenomas” OR “ACTH-Secreting Pituitary Adenoma” OR “ACTH-Secreting Pituitary Adenomas” OR “Pituitary Corticotropin-Secreting Adenoma” OR “Pituitary Corticotropin-Secreting Adenomas” OR “Corticotroph Adenoma” OR “Corticotroph Adenomas” OR “Growth Hormone-Secreting Pituitary Adenoma” OR “Growth Hormone-Secreting Pituitary Adenomas” OR “Pituitary Growth Hormone Secreting Adenoma” OR “Pituitary Growth Hormone Secreting Adenomas” OR “Prolactinoma” OR “Prolactinomas” OR “Microprolactinoma” OR “Microprolactinomas” OR “Macroprolactinoma” OR “Macroprolactinomas” OR “Acromegaly” OR “non-functioning adenoma” OR “non-functioning adenomas” OR “non-functioning macroadenoma” OR “non-functioning macroadenomas” OR “nonfunctioning adenoma” OR “nonfunctioning adenomas” OR “nonfunctioning pituitary adenoma” OR “nonfunctioning pituitary adenomas” OR “nonfunctioning pituitary macroadenoma” OR “nonfunctioning pituitary macroadenomas” OR “nonfunctioning macroadenoma” OR “nonfunctioning macroadenomas” OR “Cushing syndrome” OR “Cushing syndrome” OR “Cushing’s Syndrome” OR “Hypercortisolism” OR “Cushing disease” OR “Cushing’s disease” OR “Cushings Syndrome” OR “Hypothalamic Pituitary Adrenal Axis” OR “Hypopituitarism” OR “Pituitary Disorders” OR “Hypopituitarism”) AND (“Quality of Life” OR “Quality of Work Life” OR “Relationship Quality” OR “Family Relations” OR “Life Changes” OR “Life Experiences” OR “Lifestyle” OR “Spirituality” OR “quality of life” OR “quality of life” OR “life quality” OR “qol” OR “daily functioning” OR “daily routine” OR “limitations of functioning” OR “health related quality of life” OR “quality of life” OR “quality of life” OR “life quality” OR “qol” OR “daily functioning” OR “daily routine” OR “limitations of functioning” OR “health related quality of life” OR “well-being” OR “wellbeing”).

Web of science

TS = (Pituitary Neoplasms OR Pituitary Neoplasm OR Pituitary Tumors OR Pituitary Tumor OR Pituitary Adenomas OR Pituitary Adenomas OR ACTH-Secreting Pituitary Adenoma OR ACTH-Secreting Pituitary Adenomas OR Corticotroph Adenoma OR Corticotroph Adenomas OR Cushing syndrome OR Cushing syndrome OR Cushing’s Syndrome OR Hypercortisolism OR Cushing disease OR Cushing’s disease OR Growth Hormone-Secreting Pituitary Adenoma OR Growth Hormone-Secreting Pituitary Adenomas OR Prolactinoma OR Prolactinomas OR Microprolactinoma OR Microprolactinomas OR Macroprolactinoma OR Macroprolactinomas OR Acromegaly OR non-functioning adenoma OR non-functioning adenomas OR non-functioning macroadenoma OR non-functioning macroadenomas OR nonfunctioning adenoma OR nonfunctioning adenomas OR nonfunctioning pituitary adenoma OR nonfunctioning pituitary adenomas OR nonfunctioning pituitary macroadenoma OR nonfunctioning pituitary macroadenomas OR nonfunctioning macroadenoma OR nonfunctioning macroadenomas OR Cushing syndrome OR Cushing syndrome OR Cushing’s Syndrome OR Hypercortisolism OR Cushing disease OR Cushing’s disease) AND TS = (quality of life OR quality of life OR life quality OR qol OR daily functioning OR daily routine OR health related quality of life OR well-being OR wellbeing).

Embase

(exp hypophysis tumor/OR “Pituitary Neoplasms”.mp OR “Pituitary Neoplasm”.mp OR “Pituitary Tumors”.mp OR “Pituitary Tumor”.mp OR “Pituitary Adenomas”.mp OR “Pituitary Adenomas”.mp OR “ACTH-Secreting Pituitary Adenoma”.mp OR “ACTH-Secreting Pituitary Adenomas”.mp OR “Corticotroph Adenoma”.mp OR “Corticotroph Adenomas”.mp OR Cushing syndrome/OR “Cushing syndrome”.mp OR “Cushing’s Syndrome”.mp OR “Hypercortisolism”.mp OR “Cushing disease”.mp OR “Cushing’s disease”.mp OR “Growth Hormone-Secreting Pituitary Adenoma”.mp OR “Growth Hormone-Secreting Pituitary Adenomas”.mp OR “Acromegaly”.mp OR “Prolactinoma”.mp OR “Prolactinomas”.mp OR “Microprolactinoma”.mp OR “Microprolactinomas”.mp OR “Macroprolactinoma”.mp OR “Macroprolactinomas”.mp OR “non-functioning adenoma”.mp OR “non-functioning adenomas”.mp OR “non-functioning pituitary adenoma”.mp OR “non-functioning pituitary adenomas”.mp OR “non-functioning macroadenoma”.mp OR “non-functioning macroadenomas”.mp OR “nonfunctioning adenoma”.mp OR “nonfunctioning adenomas”.mp OR “nonfunctioning pituitary adenoma”.mp OR “nonfunctioning pituitary adenomas”.mp OR “nonfunctioning pituitary macroadenoma”.mp OR “nonfunctioning pituitary macroadenomas”.mp OR “nonfunctioning macroadenoma”.mp OR “nonfunctioning macroadenomas”.mp) AND (exp “quality of life”/OR “quality of life”.mp OR “life quality”.mp OR “qol”.mp OR “daily functioning”.mp OR “daily routine”.mp OR “health related quality of life”.mp OR “well-being”.mp OR “wellbeing”.mp).

Appendix 2: Spider plot data

PF: Physical functioning, PR: Physical role, GH: General health, Vit: Vitality, SF: Social functioning, ER: Emotional role, MH: Mental health

Dutch a-select sample (67)

 

PF

PR

Pain

GH

Vit

SF

ER

MH

Average score

81.9

79.4

79.5

72.7

67.4

86.9

84.1

76.8

Prolactinoma

Active/naïve patient groups

 

PF

PR

Pain

GH

Vit

SF

ER

MH

Johnson et al. [31]

49.3

46.2

47.9

47

43.8

41.3

40.3

43.8

Average score

49.3

46.2

47.9

47

43.8

41.3

40.3

43.8

Controlled/treated patient groups

 

PF

PR

Pain

GH

Vit

SF

ER

MH

Cesar de Oliveira et al. [28]

78.6

86

70.1

69

61.1

69.5

67.3

66.6

Kars et al. [27]

85.5

70.9

81.2

67.6

 

73.4

75.8

 

Average score

82.1

78.5

75.7

68.3

61.1

71.5

71.6

66.6

NFA

Active/naïve patient groups

 

PF

PR

Pain

GH

Vit

SF

ER

MH

Johnson et al. [31]

45.9

43

46.2

46.4

40.9

41.7

41.2

44.8

Average score

45.9

43

46.2

46.4

40.9

41.7

41.2

44.8

Controlled/treated patient groups

 

PF

PR

Pain

GH

Vit

SF

ER

MH

Biermasz et al. [33] (remission)

85.6

76.5

87.8

68.4

 

89.0

90.2

 

Dekkers et al. [32] (remission)

79.0

65

81.3

57.3

 

79.0

69.1

 

Page et al. [36] (treated)

79

73

80

66

57

86

78

75

Nielsen et al. [35] (treated)

84

72.4

82.8

70.1

66.3

90.6

77.5

82.3

Van Beek et al. [75] (RT +)

84

76

84

60

66

85

88

79

Van Beek et al. [75] (RT-)

74

69

81

59

56

77

78

72

Capatina et al. [34] (treated)

71.5

64.5

75.3

62.1

55.0

79.1

75.9

76.6

Miller et al. [87] (after GH therapy)

85.4

98.1

78.1

76.8

61.5

96.2

92.3

85.2

Miller et al. [87] (after placebo)

63.9

62.5

61.1

48.6

46.1

67

57.1

66.3

Average score

78.5

73.0

79.0

63.1

58.3

83.2

78.5

76.6

Acromegaly

Active/naïve patients

 

PF

PR

Pain

GH

Vit

SF

ER

MH

Milian et al. [62] (preoperative)

37

45.4

29.7

31.5

25.8

30.8

48.1

34.2

Johnson et al. [31] (active)

46

45

46.5

43.6

43.5

46.7

47.1

47.2

Psaras et al. [42] (no remission)

51

43.2

35.7

39.9

33.8

43.4

39.7

38.2

Average score

44.7

44.5

37.3

38.3

34.4

40.3

45.0

39.9

Controlled/treated patient groups

 

PF

PR

Pain

GH

Vit

SF

ER

MH

Miller et al. [113] (after GH therapy)

85.4

98.1

78.1

76.8

61.5

96.2

92.3

85.2

Miller et al. [113] (after placebo)

63.9

62.5

61.1

48.6

46.1

67

57.1

66.3

Wassenaar et al. [85] (spine OA)

72.6

58.9

67.1

54.4

 

77.2

62

 

Wassenaar et al. [85] (no spine OA)

84.7

90

86.9

72.7

 

93.3

95.5

 

Van der Klaauw et al. [91] (follow-up)

72.1

67.4

72.6

59.9

 

79

75.1

 

Wexler et al. [79] (GHD)

72

68

64.9

55.2

38.4

74.5

72

66.7

Wexler et al. [79] (GH sufficient)

94.4

100

84.6

78.3

66.8

95.8

100

78.2

Biermasz et al. [41] (remission)

68.6

57.4

72.2

55.6

 

79.6

70.3

 

Biermasz et al. [86] (no joint problems)

83.9

76.9

92

70.6

 

88

84

 

Biermasz et al. [86] (joint problems)

64

51.7

66.3

51.2

 

77.1

66.3

 

Postma et al. [92] (SSTA +)

65

46

65

49

48

66

78

72

Postma et al. [92] (SSTA-)

79

65

78

63

58

75

75

75

Milian et al. [62] (12 months after surgery)

51.1

54.3

36.5

46.7

52.2

55.8

56.7

60.5

Miller et al. [87] (controlled)

65

65.7

60.7

55.4

51

76.9

76.6

73

Psaras et al. [42] (remission)

34.3

35.9

32.3

33.5

32.5

37.6

38.7

45.2

Valassi et al. [47] (placebo)

63.8

68.8

63.1

38.8

26.9

65.6

62.5

55

Valassi et al. [47] (GH)

80.6

58.3

76.4

61.7

28.9

70.8

77.8

65.3

Average score

70.6

66.2

68.1

57.1

46.4

75.0

72.9

67.5

Cushing’s disease

Active/naïve patient groups

 

PF

PR

Pain

GH

Vit

SF

ER

MH

Milian et al. [62] (preoperative)

9.6

21.6

24.9

12.1

9.8

12.4

22.1

13

Johnson et al. [31] (active)

36.6

36.1

40.8

36.4

35.4

35

38.8

38.4

Psaras et al. [42] (no remission)

37.6

25

44.6

39.7

47.2

31.6

26

43.8

Lindsay et al. [53] (pre-surgery)

28.3

31.8

41.9

34.4

36.4

29.8

36.6

39.7

Van der Pas et al. [48] (untreated)

54.4

33.6

75.3

45.6

 

59.4

60.4

 

Average score

33.3

29.6

45.5

33.6

32.2

33.6

36.8

33.7

Controlled/treated patient groups

 

PF

PR

Pain

GH

Vit

SF

ER

MH

Lindsay et al. [53] (remission)

45.5

45.7

47.4

44.2

46.5

47.2

45.6

47.3

Lindsay et al. [53] (after surgery)

45.9

45.9

48.6

48.1

48.3

46.7

49

51.4

Van Aken et al. [54] (remission)

68

65

73

54

 

73

67

 

Tiemensma et al. [23] (remission)

63.5

51.3

69.6

50.1

48.6

72.1

62.7

61.4

Milian et al. [62] (12 months after surgery)

41.9

39.5

43

37.5

32

40.5

42.9

52.1

Psaras et al. [42] (remission)

43.3

40.1

38.3

31.6

36.9

32.9

58.3

40.7

Hawn et al. [51] (after adrenalectomy)

65

39

52

44

30

53

43

58

Smith et al. [56] (after adrenalectomy)

48.5

45.4

50.1

42.5

41.8

45.1

48.9

46.6

Average score

52.7

46.5

52.8

44.0

40.6

51.3

52.2

51.1

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Andela, C.D., Scharloo, M., Pereira, A.M. et al. Quality of life (QoL) impairments in patients with a pituitary adenoma: a systematic review of QoL studies. Pituitary 18, 752–776 (2015). https://doi.org/10.1007/s11102-015-0636-7

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