Health-related quality of life instruments in studies of adult men with testosterone deficiency syndrome: a critical assessment
- Langham, S., Maggi, M., Schulman, C., Quinton, R., and Uhl-Hochgraeber, K.
- INTRODUCTION: Health-related quality of life (HRQOL) is a multidimensional concept, which subjectively measures a patient's physical, social, and emotional well-being. This information is becoming increasingly important in policy and clinical decisions. With such a wide range of tools available, careful selection is required to ensure they adequately reflect patient's concerns.
AIM: To critically assess HRQOL instruments used in studies of testosterone deficiency syndrome (TDS) to see whether they accurately measure these concerns.
METHODS: A systematic review identified published articles. Studies were included if the population was adult men with TDS, with or without comorbid disease; used one or more HRQOL tools; and described the impact of treatment, the impact of TDS on the patient or the development of a questionnaire. Measurement properties and their use in clinical studies were described. Each study was assessed against 10 clinical face validity criteria to evaluate whether the questionnaires reflected issues that were of concern to patients.
MAIN OUTCOME MEASURE: Review of published literature.
RESULTS: The study identified 29 articles that included 14 HRQOL questionnaires selected for use in 20 intervention studies, seven studies of the impact of TDS on the patient, and two studies describing the development of a HRQOL tool. Questionnaires displayed variable measurement properties and only nine studies complied with more than 50% of the clinical face validity criteria. Disease-specific instruments achieved a higher rate of compliance and more often demonstrated a positive effect of treatment on HRQOL compared to generic instruments.
CONCLUSION: Instruments used to measure HRQOL display variable measurement properties and often lack adequate clinical face validity. There are well-validated disease-specific HRQOL measures for age-related TDS, but none for classical TDS patients. Clinical and political decision-makers require HRQOL information using a combination of well-validated generic questionnaires and patient-focused, disease specific instruments relevant to the target TDS population under study.
- J Sex Med
- 1743-6109 (Electronic)
- Publication year:
- Symptom status:
- Cognitive/mental state
- Functional status:
- Cognitive/mental functioning
- General health perceptions / HRQoL:
- Health-related quality of life
- Overall quality of life:
- Overall quality of life
- Adults (18-65)
- Endocrine, nutritional and metabolic diseases and related symptoms
- PRO / non-PRO:
- Patient Reported Outcome
- Type of measurement instrument:
- 1 - Questionnaires
- ADAM - Androgen Deficiency in Aging Males
AMS - Aging Male Scales
A-RHDQoL - Age-Related Hormone Deficiency-dependent Quality of Life questionnaire
Likert plus VAS - Likert plus Visual Analogue Scale
LSS - Life Satisfaction Scale
PGWBI (Also: PGWBI-S) - Psychological General Well-Being index (Also: PGWBI-S - short form)
PNUH QoL - Pusan National University Hospital Quality of Life scoring system
Q-LES-Q - Endicott Quality of Life Enjoyment and Satisfaction Questionnaire
SF-12 - 12-item Short Form Health Survey [alias: RAND-12]
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]] [see: proqolid, ZUYD (NL), also see: https://database.cosmin.nl/?utf8=%E2%9C%93&search_field=all_fields&q=SF-36+-+36-item+Short+Form+Health+Survey++%5Balias%3A+RAND-36%5D%5Balias%3A+Medical+Outcomes+Study+%28MOS%29+SF-36%5D%5D]
SIP - Sickness Impact Profile [see: ZUYD (NL)]
VAMS - Visual Analogue Mood Scale