Carolyn V. McMillan

Psychological effects of withdrawal of growth hormone therapy from adults with growth hormone deficiency

objective  Growth hormone (GH) is known to be required for physical well‐being. Although it is also widely believed to be important for quality of life (QoL) and psychological health, there is less supportive evidence. The objective of this study was to investigate the psychological effects of discontinuation of GH replacement from adults with severe GH deficiency (GHD).

Psychometric evaluation of the MacDQoL individualised measure of the impact of macular degeneration on quality of life

BackgroundThe MacDQoL is an individualised measure of the impact of macular degeneration (MD) on quality of life (QoL). There is preliminary evidence of its psychometric properties and sensitivity to severity of MD. The aim of this study was to carry out further psychometric evaluation with a larger sample and investigate the measures sensitivity to MD severity.MethodsPatients with MD (n = 156: 99 women, 57 men, mean age 79 ± 13 years), recruited from eye clinics (one NHS, one private) completed the MacDQoL by telephone interview and later underwent a clinic vision assessment including near and distance visual acuity (VA), comfortable near VA, contrast sensitivity, colour recognition, recovery from glare and presence or absence of distortion or scotoma in the central 10° of the visual field.ResultsThe completion rate for the MacDQoL items was 99.8%. Of the 26 items, three were dropped from the measure due to redundancy. A fourth was retained in the questionnaire but excluded when computing the scale score. Principal components analysis and Cronbachs alpha (0.944) supported combining the remaining 22 items in a single scale. Lower MacDQoL scores, indicating more negative impact of MD on QoL, were associated with poorer distance VA (better eye r = -0.431 p < 0.001; worse eye r = -0.350 p < 0.001; binocular vision r = -0.419 p < 0.001) and near VA (better eye r = -0.326 p < 0.001; worse eye r = -0.226 p < 0.001; binocular vision r = -0.326 p < 0.001). Poorer MacDQoL scores were associated with poorer contrast sensitivity (better eye r = 0.392 p < 0.001; binocular vision r = 0.423 p < 0.001), poorer colour recognition (r = 0.417 p < 0.001) and poorer comfortable near VA (r = -0.283, p < 0.001). The MacDQoL differentiated between those with and without binocular scotoma (U = 1244 p < 0.001).ConclusionThe MacDQoL 22-item scale has excellent internal consistency reliability and a single-factor structure. The measure is acceptable to respondents and the generic QoL item, MD-specific QoL item and average weighted impact score are related to several measures of vision. The MacDQoL demonstrates that MD has considerable negative impact on many aspects of QoL, particularly independence, leisure activities, dealing with personal affairs and mobility. The measure may be valuable for use in clinical trials and routine clinical care.

Evaluation of New Measures of the Impact of Hypothyroidism on Quality of Life and Symptoms: The ThyDQoL and ThySRQ

OBJECTIVES This article reports the psychometric properties of two new condition-specific questionnaires: 1) the 18-item Underactive Thyroid-Dependent Quality of Life Questionnaire (ThyDQoL) individualized measure of perceived impact of hypothyroidism on quality of life (QoL); and 2) the 15-item Underactive Thyroid Symptom Rating Questionnaire (ThySRQ), in which patients rate symptom bother. METHODS A cross-sectional survey was conducted of 110 adults with overt and subclinical hypothyroidism, 103 treated with thyroxine. Patients, the majority of whom (81%) were women, were recruited from primary care (57%) and from hospital clinics (43%). The mean age of patients was 55.1 (SD 14.3) years. Respondents rated personally applicable ThyDQoL life domains for importance and impact of hypothyroidism, and ThySRQ symptom bother. RESULTS Completion rates were high (>98%). All 18 ThyDQoL domains were rated as negatively impacted by hypothyroidism and important for QoL. The ThyDQoL had high internal consistency reliability (Cronbachs alpha = 0.949 [N = 97]), factor analysis indicated that applicable domains could be combined into an overall Average Weighted Impact score, for which the sample mean, -3.11 (2.2), showed considerable negative impact of hypothyroidism on QoL (maximum possible range -9 to +3). There is good preliminary evidence to justify shortening the ThyDQoL to 14 domain-specific items. For the ThySRQ Cronbachs alpha was 0.808 (N = 95). Highest symptom bother ratings were for hair problems, weight gain, depression, cold, and tiredness. CONCLUSIONS Both the ThyDQoL and ThySRQ are highly acceptable to patients with hypothyroidism and have good internal consistency reliability. Their sensitivity to change now needs to be evaluated in clinical trials.

Instruments used in measuring symptoms, health status and quality of life in hypothyroidism: a systematic qualitative review

Background  Symptoms of hypothyroidism are varied and nonspecific, thereby making clinical diagnosis impossible. Some patients report ongoing symptoms despite treatment. Measuring symptoms, health status and quality of life by using appropriate instruments, in addition to biochemical tests, is therefore vital to quantify disease severity and assess response to treatment. A number of instruments have been used in hypothyroidism, leading to lack of clarity about what exactly is being measured, and the rationale for the inclusion of particular measures is often uncertain.

Evaluation of two health status measures in adults with growth hormone deficiency

objective To evaluate the psychometric properties of two health status measures for adults with growth hormone deficiency (GHD): Nottingham Health Profile (NHP) and Short‐Form Health Survey (SF‐36).

Preliminary development of a new individualised questionnaire measuring quality of life in older men with age-related hormonal decline: the A-RHDQoL

BackgroundThere is increasing interest in hormone replacement therapy to improve health and quality of life (QoL) of older men with age-related decline in hormone levels. This paper reports the preliminary development and evaluation of the psychometric properties of a new individualised questionnaire, the A-RHDQoL, measuring perceived impact of age-related hormonal decline on QoL of older men. A-RHDQoL design was based on the HDQoL for people with growth hormone (GH) deficiency and the ADDQoL (for diabetes).MethodsInternal consistency reliability and some aspects of validity of the A-RHDQoL were investigated in a cross-sectional survey of 128 older men (age range: 64 – 80 yrs), being screened for inclusion in a trial of GH and testosterone (T) replacement, and who completed the A-RHDQoL once. Respondents rated personally applicable life domains for importance and impact of their hormonal decline. A single overview item measured present QoL. Serum levels of Insulin-like Growth Factor-I and total T were measured.ResultsOf the 24 A-RHDQoL domains, 21 were rated as relevant and important for older men. All domains were perceived as negatively impacted by hormonal decline. The most negatively impacted domains were: memory (-4.54 ± 3.02), energy (-4.44 ± 2.49), sex life (-4.34 ± 3.08) and physical stamina (-4.29 ± 2.41), (maximum range -9 to +9). The shorter 21-domain A-RHDQoL had high internal consistency reliability (Cronbachs alpha coefficient = 0.935, N = 103) and applicable domains could be weighted and summed into an overall Average Weighted Impact score. The questionnaire was acceptable to the majority of respondents and content validity was good. The single overview item measuring present QoL correlated significantly with total T levels [r = 0.26, p <0.01, N = 114].ConclusionThe new 21-item A-RHDQoL is an individualised questionnaire measuring perceived impact of age-related hormonal decline on the QoL of older men. The internal consistency reliability and content validity of the A-RHDQoL are established, but the measure is at an early stage of its development and its sensitivity to change and other psychometric properties need now to be evaluated in clinical trials of hormone replacement in older men.