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Craig D, Fayter D, Stirk L, et al. Growth Monitoring for Short Stature: Update of a Systematic Review and Economic Model. Southampton (UK): NIHR Journals Library; 2011 Feb. (Health Technology Assessment, No. 15.11.)
Growth Monitoring for Short Stature: Update of a Systematic Review and Economic Model.
Show detailsTwenty-four references published between 2005 and 2009 were retrieved relating to QoL. All were ordered, but none was found to be suitable for use in the economic model. A brief overview of the studies is provided.
Turner's syndrome
| Study details | Population | Study design | QoL instruments | Major findings |
|---|---|---|---|---|
| Li et al. (2007)25 | TS | A systematic review and economic evaluation of GH treatment | NA | GH improves final height, but the effect on QoL is unclear (only two studies). Economic evaluation based on one study using time trade-off for better height found that GH was not cost-effective, but it was concluded that ethically GH should be provided to enable final height gain |
| Sutton et al. (2005)26 | 97 US girls and women with TS and 21 parents | Qualitative study | NA | The major challenges for girls and women across the lifetime in order of importance were infertility, short stature, sexual development and functioning and general health issues. The participants were keen to have an early diagnosis |
| Carel et al. (2005)27 | 568 GH-treated patients | French population-based registry (StaTur study) | SF-36 (French) and GHQ-12 | HRQoL similar in adult women with TS treated with GH in childhood and the general population. Factors associated with low HRQoL scores: cardiac and otological involvement, induction of puberty after age of 15 years and higher expectations from GH treatment. Adult height or height gain had no influence on HRQoL |
| Carel et al. (2006)28 | 566 GH-treated patients | French population-based registry (StaTur study) follow-up | Coopersmith's Self-Esteem Inventory and Social Adjustment Scale Self-Report, SF-36 (French) and GHQ-12 | Height was not associated with self-esteem and social adjustment |
| Bannink et al. (2006)29 | Study of 49 women with TS, former participants in two GH studies | Survey | Dutch SF-36 and TNO/AZL Adult Quality of Lifea | Satisfaction with height and breast development had significant positive influence on several HRQoL scales including social and physical functioning |
| Lagrou et al. (2006)30 | 30 women aged 18–23 years old with TS diagnosed at an early age, treated in childhood with GH and oestrogens if indicated | Case–control study with age-matched reference group of 44 non-TS students | Young Adult Self Report, Self Perception Profile for College Students and Bodily Attitude Scale | TS patients did not report more behavioural and emotional problems than non-TS females except for attention problems. Reported fewer problems on some subscales. Did not differ on body satisfaction, but perceived themselves as less socially competent. BMI was related to Body Attitude Scale score, but height was not related to any of the evaluated psychosocial parameters |
| Kilic et al. (2005)31 | 11 Turkish girls 9–17 years old with TS (not all treated with GH and/or oestrogen), FSS and healthy controls | Matched control comparative study | Children's Depression Inventory, State-Trait Anxiety Inventory for Children and Piers-Harris Children's Self Concept Scale | TS girls reported lower self-concept and self-esteem and higher state anxiety than normal controls |
BMI, body mass index; FSS, familial short stature; GH, growth hormone, GHQ, General Health Questionnaire; HRQoL; health-related quality of life; NA, not applicable; TS, Turner's syndrome.
- a
TNO/AZL questionnaire for adults health-related quality of life.
Growth hormone disorder only
| Study details | Population | Study design | QoL instruments | Major findings |
|---|---|---|---|---|
| Hoybye et al. (2007)32 | 353 adults with childhood-onset GH deficiency categorised by GHD aetiology | Retrospective review | QoL Assessment of GHD in Adults Questionnaire | After 2 years of treatment with GH, QoL improved in all three groups categorised by GHD aetiology (non-organic disorder, organic pituitary disease and brain tumour), although to a lesser degree in patients in the brain tumour group |
| Attanasio et al. (2005)33 | 66 adults with severe GHD in transition to adulthood | Based on 2-year RCT of GH treatment at two doses versus no treatment | Specially developed QoL questionnaire for adult patients with GHD (QLS-H) | Overall baseline QoL was not compromised during the transition period, but dimensions related to age-specific psychological problems were worse than for healthy participants and appeared to respond positively to GH treatment |
| Sheppard et al. (2006)34 | 22 patients aged 8–16 years with diagnosis of IGHD or AGHD following malignancy | Before-and-after 6-month study | Pediatric Quality of Life inventory comprising eight items on physical functioning and 15 on a psychosocial subscale (completed by parents and children) and Parent only Strengths and Difficulties Questionnaire covering psychosocial adjustment | Children with AGHD (below population norms at baseline) improved significantly over a 6-month period on QoL measures. Children with IGHD, who were comparable to population norms at baseline, improved but not significantly. Authors concluded that the benefits of GH for QoL needed to be evaluated independently for different diagnostic groups |
| Sandberg (2006)35 | NA | Commentary on Sheppard et al.34 | NA | NA |
AGHD, growth hormone disorder; GH, growth hormone, IGHD, idiopathic isolated growth hormone disorder; NA, not applicable; QLS-H, Questions on Life Satisfaction-Hypopituitarism; RCT, randomised controlled trial.
Other conditions
| Study details | Population | Study design | QoL instruments | Major findings |
|---|---|---|---|---|
| Bertella et al. (2007)36 | 13 GH-treated adult PWS patients and their parents | Survey | SF-36, Psychological General Well-Being Index | Significant results in relation to improvements from baseline on both QoL scales in both physical and psychological well-being |
| Tanaka et al. (2009)37 | Japanese children (aged 4–15 years) with ISS (116) or GHD (127) naive to GH treatment | Case–control | Japanese Child Behaviour Checklist (CBCL/4–18) consisting of 118 multiple choice questions answered by primary caregiver | QoL is impaired in Japanese children owing to short stature |
| Brutt et al. (2009)38 | Children and adolescents with GHD or ISS | Literature review | Description of generic, condition-specific and treatment-specific QoL tools | There is a need for further research into the development of a new QoL instrument to assess short stature |
| Bullinger et al. (2009)39 | Children and adolescents with GHD or ISS | Follow-up literature review to Brutt et al.38 | Description of generic, condition-specific and treatment-specific QoL tools | There is a need for further research into the relationship of QoL and short stature |
| Visser-van Balen (2005)40 | 38 adolescents with ISS or SGA | 3-year RCT comparing GH/GnRHa treatment with no intervention | Parental interview, Child Behaviour CheckList completed by parents, Silhouette Apperception Technique (parents and adolescents), Adolescent self report on Dutch version of Self Perception Profile for Children (CBSK) and for Adolescents (CBSA), Dutch version of Stait Trait Anxiety Inventory for Children (ZBV-K), KDVK (short depression questionnaire for children) and Dutch Personality questionnaire-Junior (NPV-J) | The observation of some adverse psychological consequences as reported by adolescents shows that it is useful to monitor psychosocial functioning during combined GH/GNRHa treatment in adolescents with ISS or SGA. It is uncertain whether any positive effects of expected gain in final height can sufficiently counterbalance possible short-term negative effects |
| Visser-van Balen (2007)41 | 30 adolescents with ISS or SGA | Follow-up to previous study40 on average 5.5 years after cessation of treatment | Semi-structured interviews of young adults and their parents on social circumstances, height-related psychosocial stressors and psychosocial functioning and well-being, Self-Perception Profile for Young Adults (Dutch version), Dutch version of the State-Trait Anxiety Inventory (ZBV) | In the long term, and independent of hormone treatment, adequate psychosocial adjustment is expected for those with short stature |
| Bannink et al. (2005)42 | Adolescents born SGA mean age 15.8 years (standard deviation 2.1 years) treated with GH (44) or untreated (28) | Comparative study | Self-reports of the Children's quality of Life Short Stature Module (TACQOL-S) disorder-specific questionnaire and the generic Child Health Questionnaire (CHQ) | Adolescents born SGA treated with GH had better QoL than untreated group according to a disorder-specific questionnaire. The authors advise the use of a disorder-specific questionnaire for measuring QoL in children with short stature in addition to a generic questionnaire which did not reveal differences in QoL |
| Storch et al. (2005)43 | 26 children with short stature (pathological, unknown and not related to pathology) and 32 children with DM1 | Comparative study | Child Behaviour Checklist, children's Depression Inventory, Social Anxiety Scale for Children – Revised and Asher Loneliness Scale administered to child and parent | Parents of children with short stature rated their children as having more social, thought and attention problems and exhibiting greater delinquent behaviour than parents of children with DM1. No diagnostic differences in child or parent-rated internalising symptoms were found |
| Norrby et al. (2006)44 | 199 Swedish children aged 9–16 years with diagnoses of asthma (53), diabetes (48), short stature (51) and juvenile chronic arthritis (47) | Comparative study | Child Health questionnaire child form and Parent form (others used for validation of this questionnaire) | Short stature group had the highest QoL of the four groups |
GH, growth hormone; GnRHa, gonadotropin-releasing hormone analogue; DM1, diabetes mellitus type 1; RCT, randomised controlled trial.
General papers
| Study details | Population | Study design | QoL instruments | Major findings |
|---|---|---|---|---|
| Zlotkin and Varma (2006)45 | Children with short stature | Literature review | NA | There are effects of GH therapy on GHD children beyond the increase in final adult height. These factors should be taken into consideration when GH is prescribed for them |
| Voss (2006)46 | Children with ISS | Literature review | NA | There is no compelling evidence to show an association between short stature and cognitive and psychosocial maladaptation or dysfunction |
| Christensen et al. (2007)47 | 14,416 adults | 2003 Health Survey for England (HSE03) | EQ-5D | Short adult stature is significantly correlated with HRQoL. The largest deficit in HRQoL was seen in those with the greatest deficit in height relative to the population norm |
| Sandberg and Colsman (2006)48 | Children with short stature | Literature review | NA | Clinicians should consider incorporating a psychosocial component in the diagnostic evaluation of short stature (follow-up to previous study40) |
EQ-5D, European Quality of Life-5 Dimensions (also known as EuroQol quality of life questionnaire); GH, growth hormone; HRQoL, health-related quality of life; NA, not applicable.
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