Eight questionnaires were reviewed in this thesis, four developed for CAM, the CIMOS, HEHIQ, SAC questionnaire and the MYMOP and four developed in non CST/CAM settings, the WEMWBS, SF-36, SF-12v2 and the EQ-5D.
Tables 11 and 12 lists each of these questionnaires and shows the domains of importance required for CST outcomes and which questionnaires tap these domains. It presents the number of items and provides a rating (good, moderate or poor) for the reliability, validity and sensitivity to change of each questionnaire. A comments section focuses on the areas
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in which the questionnaires lack provision or aspects which impact suitability for CST and any applicable costs are reported.
Summarising the content of Table 11 and Table 12: whilst generally there was some matching with the content of measures developed for CAM use, each measure lacked provision to capture all the outcomes of relevance to CST in some way. The CIMOS has a high emphasis on pain and fatigue items; the HEHIQ lacks items related to physical health, self-awareness and self-care but the remainder items tap the other outcomes of CST; the SAC lacks items that tap self-awareness and self-care; the MYMOP lacks provision for outcomes of a spiritual nature. The reliability and validity of these questionnaires were questionable as only the authors have tested the questionnaires and the results suggest either poor reliability and validity or that the psychometric properties are yet to be established. The MYMOP is the only questionnaire in this group which has demonstrated the ability to detect real change over time.
Referring to the content of non-CST/CAM questionnaires: the WEMWBS captured positive mental wellbeing only and lacks items which address the physical functioning, self-care and self-awareness; SF-36 and the SF-12 v2 lack provision for spiritual outcomes; they do not address adaptation or coping, or have items that tap self-awareness. These measures did not incorporate patient input during the early stages of their development and have a high emphasis on symptomatology; the EQ-5D also lacks provision for spiritual outcomes and self-awareness. All four questionnaires developed in non-CST/CAM settings have good reliability and validity and are sensitive to change. Fees are applicable for the SF-36, SF-12 and EQ-5D depending on application; no fee applies to the WEMWBS.
To conclude: all questionnaires assessed in this review lacked provision in at least one area, and failed to tap items for self-awareness and most failed to tap self-care. The development of a new PRO to capture all outcomes of importance to CST users is, therefore, justified.
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Table 11: Candidate PROs (non-CAM)
PROs non-CAM Domains of importance:
Physical WB, Mental WB, Spiritual WB, Social WB, Self- awareness, self-care,
patient engagement No of items Reliability a Validity a
Sensitivity to change b comments Warwick - Edinburgh Mental Wellbeing Scale (WEMWBS)
Positive affect, relationships and functioning
14 Good Good Yes Lacks domains of physical, items of self-care and self-awareness, responsibility for self. Free to use. Total Score.
Short Form Health Survey 36 (SF-36)
General, physical, pain, energy, mental, social, and role functioning.
36 Good Good Yes Lacks spiritual domain. Fails to address adaptation and coping, patient engagement. No patient input during development. Cost for use.
Short Form Health Survey 12 (SF-12)
Physical functioning, Role-physical, bodily pain, general health, vitality, social functioning, role emotional, mental health
12 Good Good Yes Lacks spiritual domain. Fails to have address adaptation and coping, patient engagement. No patient input during development. Cost for use.
Europe Quality of Life Scale (EQ-5D)
Pain, activities, mobility, self-care, VAS overall health and utility score
5 and 1 VAS Good Good Yes Lacks spiritual domain, self-
awareness. Large ceiling effects and some floor effects. Cost for use.
aA rating of ‘good’ means the questionnaire has been tested in many studies conducted by researchers other than the author, with measurement properties
reported as ‘acceptable’ confirming the different reliability and validity. A rating of ‘poor’ means that only the authors have tested the questionnaire and the
results suggest poor reliability or validity, or they have not been tested. ‘Moderate’ means the quality of the evidence is somewhere between ‘good’ and ‘poor’.
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Table 12: Candidate PROs developed for CAM assessed in this thesis
PROs developed for CAM use
Domains of importance: Physical WB, Mental WB, Spiritual WB, Social WB, Self- awareness, self-care, patient engagement
No of
items Reliability a Validity a
Sensitivity to change
b comments
Complementary and Integrative Medicine Outcome Scale (CIMOS)
Pain, fatigue, physical, personal control, existential issues, QoL.
(29) 35 Poor Poor Unknown High emphasis on pain and fatigue items. Free to use. No total score given. Modular domains
Measure Yourself Medical Outcomes Profile
(MYMOP)
Identifies problem, rates two symptoms and one activity and change. Also, records change in medication use.
7 Moderate Good Yes Lacks spiritual domain. Free to use, Measures two problems/illness only.
Harry Edwards Healing Impact Questionnaire (HEHIQ)
Mental outlook, energy, health, relationships, emotional balance
20 Poor Poor Unknown Was developed and evaluated in a sample similar to that of CST. Lacks items related to physical health, self-awareness, self-care and responsibility for self. Free to use. No total score given.
Self-Assessment of Change (SAC)
Sleep, Energy, Senses, Focus, overwhelm, hope, connection, mood, defined.
18- word pairs
Moderate Poor No Lacks items on self- awareness, self-care and responsibility for self. Nine-word pairs, responders rate change between now and before on a Visual analogue scale.
A rating of ‘good’ means the questionnaire has been tested in many studies conducted by researchers other than the author, with measurement properties reported as ‘acceptable’ confirming the different reliability and validity. A rating of ‘poor’ means that only the authors have tested the questionnaire and the results suggest poor reliability or validity, or they have not been tested.
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